October 2022
RIBBONS
Knowledge is Power. Strength in Sisterhood. www.younightevents.com
Meet 19 Incredible You Night Cancer Survivors who share their stories about 18 different cancers.
1st 2022 Portraits in this magazine were taken by Tracie Morris Schaefer Studio U
WE HELP WOMEN FIND PGA PATH FORWARD AFTER A CANCER DIAGNOSIS. When a person is diagnosed with cancer, the journey can be scary and confusing. Since 2013, the We Lift You Up fund has been offering yearround programs that bring women together from every walk of life and every type of cancer to find a sisterhood of support and tools for better living. Known as the "You Night Sisterhood", we use our empowering platform to share journeys, inform, provide hope and inspiration, and to give information and resources to others who are diagnosed.
SCAN THIS QR CODE TO LINK TO A VIDEO INTERVIEW WITH FOUNDER LISA MCKENZIE, TO LEARN MORE ABOUT THE ORIGINS OF YOU NIGHT
SCAN THIS QR CODE TO VISIT OUR YOUTUBE CHANNEL FOR INSPIRING CONTENT
In this inaugural issue of RIBBONS MAGAZINE, you will find the personal stories of 18 women, each with different cancers. It is our hope through their experiences - that our readers will be better informed. Information TRULY is power. Maybe the information will prompt you to be more pro-active on screenings. Or perhaps something just "didn't feel quite right" and these stories about knowing your own body and seeking medical attention early will save a life. Also in this magazine are profiles about the many community partners we work with. Incredible work is being done here in our community! THERE IS HOPE! Get involved, do your part, check in on someone who is diagnosed. There is power in community, and we thank everyone for helping us do OUR part in helping those diagnosed. Thank you for 10 wonderful years where our sisterhood has grown to impact the amazing ladies that we serve, and their family members! Your support has made this possible!
With love, Lisa McKenzie
Founder / CEO, You Night Events 2021 Astella's Oncology C3Prize Innovation Prize Winner RIBBONS MAGAZINE Publisher Founder, ScART lisa@younightevents.com
WE LIFT YOU UP. YOUNIGHTEVENTS.COM FACEBOOK: @YOUNIGHTEVENTS.COM
"Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.” ~Matthew 17:20-21
IN THIS ISSUE October 2022
Ribbon's Magazine On the cover: Original art created by You Night Programs Director Deborah Tonguis. Find out how You Night programs are impacting women in our community on page 142
Featured: TURNING PAIN INTO PROGRESS How former state representative Julie Stokes repurposed her experience as a breast cancer survivor into her life's work of advocating for cancer patients.....page 12 LIFE SAVING AND SURGICAL ADVANCES How local researchers and scientists are making huge strides in the fight to save and improve the lives of cancer patients. Featured: PG Can a simple blood test help detect over 50 cancers earlier?........ 14 Restoring sensation to the breast after a Mastectomy.................................. 52 Natural, living nipple and areola replacement through LOPA................. 58 The importance of biomarker testing in informing treatment and care....................................................................... 87
PG 8
MEET OUR RIBBON AMBASSADORS Jerry Parker, Lavender - All Cancers
34
Camey Grau, Pink - Breast Cancer
62
Shanta Burns, Pink, Teal & Lime Metastatic Breast Cancer
66
Sherry Heller, Pink & Black - Triple Negative Breast Cancer
70
Renee Girault-Branch, Teal & White Cervical Cancer
76
Joy Kampen, Black - Melanoma, Skin Cancer
82
Amy Bairnsfather, Royal Blue- Colorectal Cancer
90
Karen Ziebarth, Orange - Leukemia, Blood Cancers
94
Kristen Monroe, Yellow - Bone Cancer
98
Pamela Kroeper, Burgundy & Ivory Head and Neck Cancer
106
Deidra Langridge, Lime Green Non-Hodgkin's Lymphoma
110
Rebecca Lovingood, Purple - Hodgkin's Lymphoma
114
Heidi Rhea, Green - Bile Duct Cancer
120
Rachel Strain, Grey- Brain Cancer
124
Lori Bentley, Peach - Endometrial Cancer
128
Collette Marietta, Burgundy, Blue and Gold Adenoid Cystic Carcinoma
132
Michelle Ripoll, Zebra - Neuroendocrine cancer
136
Katie Brupbacher, Teal - Ovarian cancer
140
Camille Reynolds, Gold- Children's Cancers
RIBBONS is a publication of younightevents.com 877-591-5936
INSTAGRAM: @younight_runway
Jerry Parker Lavender Ribbon Ambassador representing
All Cancer Survivors
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Meet Jerry Parker
Hi my name is Jerry Parker, and I'm honored to be the ambassador of the lavender awareness ribbon representing all cancers. Although normally I would be wearing the pink ribbon for breast cancer (I was diagnosed with a very aggressive form of Stage 2 Invasive Ductal Carcinoma), I am here to paint a bigger picture of what anyone might experience if they hear the life-changing words, "You have cancer". Regardless of the type of cancer, those are the scariest words anyone might ever hear. While cancer can be very serious, there are so many ways that individuals can be proactive to catch cancer early, and we live in a community where we have access to incredible care.
I belong to a local organization called the "You Night Sisterhood". We are a sisterhood of support open to any woman diagnosed with any type of cancer. Hundreds of women call our organization seeking a kind word, a hug or a desire to participate in a variety of programs that You Night offers. You Night's sole purpose is to help women find a path forward after a diagnosis. The biggest takeaway that we want you to have is that you are not alone on this journey! There are incredible individuals who desire the best for you, so please don't go through this journey without a strong tribe. Lean on your doctors and nurses, and reach out to support organizations like ours. Take it one day at a time, and never give up! One of the ways we are hoping to make a difference is by advocating to you - our reader - about our personal experiences. Inside this magazine, you will find the stories of 18 of my You Night sisters. As you read all of our stories in this magazine, you will see that cancer comes in a variety of forms. It can affect a body part (like the breast); it can affect the blood stream (like Leukemia); it can be in your bones and on your skin. The best advice ALL of the sisters in this magazine give is that YOU KNOW YOUR BODY. If you have a symptom, don't let too much time go by before seeking a professional opinion. And if the opinion doesn't sit well with you -- trust your intuition and seek another opinion. This magazine has been divided into 18 sections, where the color that is featured represents the awareness ribbon of each particular cancer. Each Ribbon Ambassador will share her story of how she discovered that she had that particular type of cancer, what symptoms she had, how she was treated, and her best advice. There are info-graphics in each section that go over signs and symptoms, and we hope everyone takes a moment to get familiar with those. You have heard it said over and over again, "EARLY DETECTION IS KEY." What someone experiences as a stage 0 or stage 1 cancer is vastly different than what someone will experience at Stage 2, 3 and 4. Don't let symptoms go unchecked and don't delay your check ups. Yes, cancer is scary but we want you to know that each of us in this magazine were told we have cancer, AND WE ARE STILL HERE TO TELL OUR STORIES. Read that again. We are still here!! Stay strong. Keep the faith. Surround yourself with a strong tribe. With love and blessings, Jerry Parker
Scan to link to Jerry's Interview
Jerry's journey with breast cancer How did you first learn you had cancer? I first learned that I had a very aggressive form of Stage 2 Invasive Ductal Carcinoma breast cancer after experiencing painful burning in both breasts in September of 2012 and I did not wait to see a doctor. Immediately, I called my OB/GYN and got an appointment. After a mammogram and several scans, the surgeon informed me that I had an aggressive form of Invasive Ductal Carcinoma breast cancer. Don't ignore your instincts. Being proactive and insisting on getting prompt appointments was a key to me getting diagnosed. Be your own advocate. However, every woman first learns about their type of cancer in a different way, at a different time and in a different setting. Could you feel or see the tumor/mass, or was this something that had to be detected with a scan, etc? What made you want to go seek an opinion? I could actually feel the masses in both breasts; the left was benign and the right was cancerous - both required surgery. Having extreme painful burning in the breasts that I started experiencing after Zumba classes made me want to see my physician and get a scan done immediately. Obtaining a medical opinion actually gave me a peace of mind. A woman wants a peace of mind so she can know what's going on with her body and seek the necessary treatment if required because early detection can save lives. Were you shocked that you had cancer? I was definitely shocked to learn that I had cancer, especially this kind of cancer. Women are shocked to have any kind of cancer; it's just one of those medical diagnoses that no one wants to be told that they have been diagnosed with. There are 18 different types of women cancers featured in this magazine, and any one would still shock me or any woman. When you were diagnosed, did you feel like you needed a support network, and were resources offered to you for support? Yes, I needed a support network: shout out to my family (Mother, Sisters, Brother, Nieces, Nephews), friends, neighbors, coworkers, church, Fredrick’s Janitorial Service, TLOD, Cancer Care, Tactile Medical Company, the medical team, nurses, social worker, other staff at Tulane Medical Center, etc. Yes, resources were offered to me for support. It worked for me, and I have known it to
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work for others. Resources vary - for each person it’s about communications on all levels. The social worker at Tulane was beneficial in providing a list of resources and working with me and other patients. It is IMPERATIVE that resources are available to support the patient and the families to help ease the stress. How did You Night help you find support and why is support necessary? You Night helped me find support by creating a safe space for me and other women diagnosed with other forms of cancer to share our experiences, stories, and to lean on each other for advice and inspiration. “You Night offers various programs that teach cancer survivors how to overcome the physical and psychological challenges of cancer treatment through teamwork, coaching, and strong interpersonal support from a network of survivors.” All of the programs that You Night offer are beneficial, however, the “ScART: Scar Art Painting Program helped me to love and embrace my scars, so now I feel more comfortable in my clothing and, oh boy, I always talk about my beautiful scars (my scars and I are tight-knit). Painting my scars allowed me to get in touch with them emotionally and explore my true feelings on the canvas. I’ve come from the bottom shelf to the top shelf showcasing my beautiful scars. The You Night process aims to help me and other women cancer survivors feel less alone in our journey and to embrace life beyond cancer. I’m proud to be a part of the You Night organization because this is a place where I can talk about and work through the fears and challenges I experience with other women who have gone through similar experiences. (For more information on Your Night Program, visit www.younightevernts.com). Support is necessary because immediately after my cancer diagnosis, and throughout my entire treatment period, the support of my family, friends, community, Fredrick Parker’s Janitorial Service, You Night, Tulane Medical Center, etc. continues to be critical in helping me regain a sense of normalcy, to maintain my emotional stability and improves my chances of ensuring a positive outcome (appointments, scans etc.) and to keep HOPE of being cancer free. This solid system of support helped me on the road to a full recovery to say: "I’m Cancer Free."
My advice to others: Cancer does not discriminate, but it is survivable when caught early. It's important to know your body and to know what normal feels like for you and only you. Embrace the survival stories of others who have traveled this path before you. Know that you are not alone and you never will be. There is strength in community and beauty in every chapter. Believe that you CAN do hard things. It is when you find empowerment that true healing begins. It is then that you will begin to see yourself as the survivor you are ..the amazing survivor you've been all along! Be positive and surround yourself with those that make you happy, smile and laugh. Cancer is not your life. It is one chapter in your life. Remember your life is filled with so many other things. Cancer is just one tiny part. We are all determined to survive. All things are possible through FAITH. There is always HOPE. Always BELIEVE You are beautiful! Keep Smiling - You Got This, Girl! Jerry Parker.
Cancer left me, But I never left cancer. Julie Stokes, Breast Cancer Survivor Founder of Survivor's Cancer Action Network
This year the American Cancer Society estimates that nearly 29,000 Louisianans will learn for the first time that they have cancer. That’s a shocking statistic, and like so many statistics, it’s easy to read and forget — until you become one. In 2017, when I was diagnosed with breast cancer, what was formerly just data became vividly real. Like many other working women, I didn’t spring into action when I noticed a lump. There was no family history of the disease, and my last mammogram was negative. Moreover, the Legislature was in session, and we had bills to pass. My body could wait until the people’s business was concluded. Once session ended, weeks of testing revealed stage 2B triple-negative breast cancer. Two brutal chemo rounds and seven months later, I was declared cancerfree. I was lucky. Cancer may have left me, but I did not leave cancer. It’s now a major part of my life’s work to fight against the disease. In the beginning, when I was still in the legislature, I repurposed my cancer struggle into a mission to advocate. If I could pass legislation to help patients access preventative early multicancer detection tools and receive the most cutting-edge treatments, my struggle with cancer would have meaning and could improve the lives of others. Even after leaving the legislature for the last two and half years, I continued the journey of advocating and learning about the world of cancer care. Through it all, I have been blessed to meet many incredible survivors who have shared their beautiful stories of repurposing their battles with cancer into missions of helping others. Hearing their stories left me yearning to help them tell their stories and sew their seeds of hope to a broader audience.
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But there is another side to the cancer story. Nothing about cancer is easy. Treatment often makes working, parenting, and even caring for oneself difficult. And often, even once you are “cured,” life can be challenging to put back together. The cancer journey often brings feelings of despair and anger.
(Interview with Julie Stokes, cont'd) Almost 20% of Louisianans live below the poverty line, and another 40% are considered “working poor,” living from paycheck to paycheck. Introducing cancer into a household that is already stretched to the limit can bring enormous strain, leading to depression, anxiety, and hopelessness. Even those with financial resources might not have people to accompany them to treatments, help with their daily responsibilities when they are feeling sick, and be their shoulder to lean on when the going gets tough. With so many people out in our state who could use a hand, and so many others that are eager to lend that hand, the essential task is to connect them. And that’s where the Survivor’s Cancer Action Network comes in. SCAN will bring together cancer survivors, doctors, scientists, and philanthropists to improve the patient experience and ultimately drive superior outcomes for cancer care in the State of Louisiana. If you are a patient, survivor, or caregiver, sign up for SCAN at www.scan-la.org. You will be connected to a network of survivors seeking to help one another. Opening the door to the SCAN community will open the door to much-needed help and resources for some and connections and platforms that will allow others to tell their story and make an impact. Julie Stokes is the founder of the Survivors Cancer Action Network and Ellevate Louisiana, a former state representative from Kenner, and a breast cancer survivor.
You Night programs offer empowering group experiences that help women find a path forward after a cancer diagnosis. We are a sisterhood of support for women diagnosed with any type of cancer. www.younightevents.com
INTERNATIONAL AWARD WINNING PROGRAM
Story Crafting Research shows that women in socially active support systems have better health outcomes. Our team is here for you! Write to us and we'll help you get plugged in! teamyounight@gmail.com
CANCER AND CLINICAL RESEARCHMAKING A HEALTHIER LOUISIANA Rabia Cattie, M.D. and Marcia B. Henry, Ph.D. A cancer diagnosis is not as dreaded as it once was. In the last century, a diagnosis of cancer struck fear in most because of a short life expectancy often followed. However, things are changing in the 21st century because of early detection and innovative therapies. In Louisiana, an 85-mile stretch of land located along the Mississippi River between Baton Rouge and New Orleans is often referred to as a “cancer alley” because of its high cancer incidence and mortality rates. Lung cancer is the leading cause of cancer deaths in both men and women. In women, this is followed by breast, colorectal, pancreatic, and ovary and uterine cancer as depicted per 100,000 women in the chart below. The bars show the Louisiana mortality rate (purple) compared to the US mortality rates (blue).
Early Detection is Key While survival rates have increased over the years, healthcare inequities still result in higher mortality rates in medically underserved communities. These outcomes can be improved by increasing awareness and access to health care and increasing participation in clinical trials across all populations.
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What are clinical trials?
Clinical trials are research studies aimed at evaluating medical therapies and improving screening for early detection. They allow researchers to see if the new treatment is safe and effective in people the with a disease. All new treatments must go through the clinical trial process to see if they work better than the current treatments before the FDA can approve them for use in patients. Clinical trials have several phases. Phase 1 trials determine safety and dosage in healthy volunteers. Phase II trials continue testing the safety of the drug a larger number of people and time to identify side effects of the drug and how to see if it is effective in treating the disease. In Phase III trials, more robust testing of the therapies for efficacy and safety is conducted with thousands of individuals, sometimes over several years. Researchers review the data to determine if the new treatment is better, worse, or the same as the current treatment or placebo before FDA approval.
If a cancer “signal” is detected, the Galleri test is designed to identify the location in the body where the signal may be coming from. Healthcare providers can use the results to determine the appropriate test(s) to confirm whether cancer is present.
It is critically imporatant that clinical trial participants reflect the diversity of the people affected by the disease across race, ethnicity, sex, and age. It allows researcher to accurately determine that the treatment is effective in treating the disease in most people with cancer across all demographics. All cancer drugs and treatment therapeutics were once part of the clincal trial process. Yet people often opt for standard care. Without clinical trial participants, more effective treatments could not be developed. The Gulf South Clinical Trials Network (Gulf South CTN) is part of the National Cancer Institute Community Research Program (NCORP) [2]. Its members include LSU Health, Mary Bird Perkins, Ochsner Health, and Ochsner/LSU-Shreveport. They have united to improve equal access and availability to the latest treatments and cancer studies in the Gulf South region. Their aim is to improve the quality of patient care and reduce the rate of cancer deaths over the next 10 years.
Cancer Detection: A New Horizon in the 21st Century The GRAIL study might be a game-changer. GRAIL, a healthcare technology company, is studying through clinical trials its Galleri product, a multi-cancer early detection (MCED) test. They are being conducted in a partnership with major pharmaceutical companies in the US. This blood test detects a “signal” from abnormal DNA in cancer tumor cells circulating in the blood. The Galleri blood test can detect more than 50 types of cancer through a single blood draw. Forty-five of those cancer types don’t currently have another recommended screening.
This revolutionary, noninvasive cancer screening can dramatically lead to improved outcomes for all cancer types, especially ovarian, lung, and pancreatic cancers, which are usually detected in late stages of the disease. Ochsner Health Precision Medicine and Biospecimen & Core Research Laboratory have partnered with GRAIL to evaluate the safety and performance of the Galleri test for patients in Louisiana, complementing single cancer screening tests [2]. Those eligible to enroll in the PATHFINDER 2 , are 50 years and above who are not currently being assessed or treated for cancer. Ochsner will also use the upcoming GRAIL REFLECTION registry program to identify educational and access gaps and barriers to cancer screening. They will work to develop patient education materials and community outreach to improve awareness and education about early cancer detection. You can find out more about this study, please scanning the QRCode below to link to the website. Rabia Cattie, MD, is a medical oncologist at Ochsner Medical Center in New Orleans, La., specializing in breast cancer care. Marcia Henry, PhD, is a research scientist at Ochsner Health in New Orleans, La., specializing in cancer health disparities, precision medicine and targeted drug delivery. [1] LSUHSC, "Louisiana Tumor Registry/data-usestatistics/louisianacancer-data-visualization-dashboard," December 2021. [Online]. Available: https://sph.lsuhsc.edu/louisiana-tumor-registry/datausestatistics/louisiana-cancer-data-visualization-dashboard. [2] "Gulf South Clinical Trials Network," [Online]. Available: https://www.gulfsouthclinicaltrials.org/. [Accessed Aug 2021]. [3] Medical Device Network, "Grail and Ochsner partner to offer multicancer early detection test," 6 June 2022. [Online]. Available: https://www.medicaldevice-network.com/news/grail-ochsner-multicancer-early-detection-test/. [Accessed 10 August 2022].
THE POWER OF
ADVOCACY Julie Stokes, Founder of SCAN (Survivor's Cancer Action Network) was instrumental in the passing of four major bills that benefit cancer patients. Pictured here: Governor John Bel Edwards signing the four cancer care bills into law that improve all Louisianan’s access to cutting edge cancer testing and treatments and will improve overall health outcomes for cancer patients. Aug 4, 2022
Also pictured from patient, provider and Industry organizations throughout the state: Alice Kline, Louisiana Government Relations Director, American Cancer Society, Adrianne Jouet, Natera, Michael Grieshaber, Caris Life Sciences, Blake Neely, Director, Guardant Health, Brandon Sonn, Strata Oncology, Julie Stokes, Founder, Survivors Cancer Action Network and Ellevate Louisiana, a former state representative from Kenner and a breast cancer survivor, Louisiana State Representative Jeremy LaCombe, Lisa McKenzie, Founder, You Night Sisterhood. Not pictured but instrumental in all efforts: Louisiana State Senator Kirk Talbot, Ralph Corsetti, Professor of Surgery specializing in Surgical Oncology, Breast Care, Hematology and Medical Oncology, Tulane University School of Medicine, Dr. Mark Matrana Ochsner
“This year the American Cancer Society estimates that nearly 29,000 Louisianans will learn for the first time they have cancer,” said Julie Stokes, founder of the newly formed Survivors Cancer Action Network. “That’s a shocking statistic, and like so many statistics, it’s easy to read and forget — until you become one. The Louisiana cancer community is encouraged by the work being done at the state and federal level, especially by the Louisiana Legislature and Governor John Bel Edwards, in making these critical bills into law.”Julie Stokes is also excited to launch the Survivors Cancer Action Network in the coming days which will focus on involving everyday cancer survivors in these important advocacy efforts. “My ability to advocate for cancer patients and survivors gave my own struggle purpose,” said Stokes. “It is my hope to share that with others, while providing connection, comfort, and a myriad of services to Louisiana’s vast survivor community.”
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SIGNED INTO LAW, AUGUST 4, 2022 SB 118, Biomarker Testing, will enhance cancer testing based on recognized guidelines. This testing is key to providing access to precision medicine treatments for cancers where treatable genetic mutations are known by science. Precision medicine treatments are much easier than traditional chemotherapy but you have to be tested to know if you have one. SB 146, Precision Medicine, will expand access to precision medicine cancer treatments through health insurance coverage. SB 154, NICU Biomarker Testing, will expand health insurance coverage of biomarker testing for infants born in medically fragile condition and in the NICU to help get them out of the NICU and home with their parents. SR 77, Medical Records Portability, will employ the Louisiana Department of Health to study and make recommendations on giving individuals greater access to their own health records to make navigating cancer treatment less cumbersome.
About SCAN Mission SCAN unites cancer survivors, doctors, scientists and philanthropists to improve the patient experience and ultimately drive outcomes for cancer care in the state of Louisiana.
Taking Action by giving others a voice SCAN plans to be the largest network of cancer patients, survivors, caregivers, and medical professionals in the state of Louisiana in order to: Unite survivors in a helping community by inviting then into a social network where they can help one another and access much-needed resources, hope, and strength for their battles. Provide professional, non-clinical navigation services to patients, survivors and caregivers to connect them to services to improve their experiences and ultimate health outcomes. Engage scientists, doctors, and cancer survivors to collaborate on and pass legislation to bring cutting-edge cancer science into the care received by everyday Louisianans.
Use your voice and experience. Make a difference and get involved. Visit: www.scan-la.org
Cancer in the United States According to Medical News Today, 1 in 2 women and 1 in 3 men in the US will develop cancer within their lifetime. These figures highlight that cancer is, indeed, not rare and something a large part of the population faces at some point in their life. It cannot be said enough: Early detection is key! These statistics are a primary reason that You Night is partnering with area physicians and hospitals to use our platform to inform and advocate for: Self-awareness. If something seems suspicious, consult a physician immediately. Know your family's history. Reduce cancer causing risks. Stay on top of your check ups.
Femaie breast Prostate Lung and Bronchus Colon and rectum Melanoma of the skin Non-Hodgkins Lymphoma Urinary bladder Kidney and renal pelvis Corpus and uterus, NOS Thyroid Leukemia Pancreas Oral cavity and larynx Liver / Bile Duct Stomach Myeloma Ovary Brain
Most prevalent cancers
Esophagus Cervix / Uteri Larynx Hodgkins Lymphoma Other
Source: CDC.GOV
15 ways to reduce your cancer risk: Avoid menopausal hormone-replacement therapy. Don’t smoke or use any tobacco products. If you have kids, breast-feed your babies for at least Don’t smoke other products (i.e., marijuana). six months. Research shows smoking anything increases Get screened for cancer. Check with your doctor or the risk for lung cancer. health care provider about what type of screening is Minimize alcohol intake. For women, the right for you. Screening finds cancer early, at more recommendation is one drink a day or fewer. treatable stages, or can find growths before they For men, no more than two drinks a day. become cancerous. Screenings are available and Keep your weight in a normal range (BMI effective for breast, colorectal, cervix, skin and lung under 25). Focus on nutritious foods like cancers. In addition, some men may benefit from vegetables, fruits, and whole grains. Minimize prostate cancer screening. intake of sugary drinks and calorie-dense Consider preventive vaccines (such as the HPV foods. vaccine to prevent cervical cancer or the hepatitis B Limit consumption of red meats. This includes vaccine to lower the risk of liver cancer). beef, pork, and lamb. Also, avoid processed Know your risk. Medications to reduce the risk for meats. breast, colon or prostate cancer are available for Don't use supplements to try to protect those at high risk. against cancer. Know your family history. For those with a strong Be physically active. Aim for at least 30 family history of cancer or with precancerous minutes a day of moderate-intensity exercise. conditions, additional prevention methods (including Limit sun exposure. Cover up and use surgery) are available. Talk with your doctor or sunscreen. health care provider, who may refer you to a Avoid unnecessary X-ray or CT scan tests. specialty clinic. These tests involve radiation that can cause cancers. Source: https://www.fredhutch.org/en/news/center-news/2014/01/15-ways-to-reduce-your-cancer-risk.html The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
Oncology / Breast Services Scan to link to John H. Stewart, IV, MD, MBA, FACS Dr. Stewart's Interview Director, LSU Health New Orleans LCMC Health Cancer Center at University Medical Center
John H. Stewart, IV, MD, MBA, FACS, is Center Director of the LSU Health New Orleans/LCMC Health Cancer Center at University Medical Center New Orleans. In thisrole, Dr. Stewart sets the overall mission, vision and direction for multidisciplinary cancer care and cancer clinical research programs for LSU Health New Orleans and LCMC Health. He and his team are working to develop a robust cancer clinical trials program, leverage resources to build an innovative targeted cancer research enterprise and create a comprehensive community outreach and engagement program to reduce cancer risk behaviors and cancer incidence. A board-certified surgical oncologist originally from Shreveport, Dr. Stewart was recruited from the University of Illinois College of Medicine in Chicago, one of the country's largest and most diverse medical schools. There, he served as a University of Illinois Presidential Scholar, professor of surgery in the College of Medicine, deputy director of the University of Illinois Cancer Center, and physician executive for oncology sciences at the University of Illinois Health. Dr. Stewart also earned an MBA from Wake Forest and completed leadership and public policy training at the Harvard School of Public Health.
John Colfry, III, MD Breast Surgical Oncologist Touro Dr. John Colfry III specializes in Breast Surgical Oncology at Touro. After earning his medical degree from Louisiana State University Health Sciences Center in Shreveport, Louisiana, Dr. Colfry completed residency at Atlanta Medical Center in Atlanta, Georgia. He completed a fellowship in Breast Surgical Oncology at the University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Colfry specializes in surgical treatment for breast cancer including lumpectomy, mastectomy, breast conversation techniques, and oncoplastic surgery. He’s mastered innovated surgical techniques such as radioactive seed localized lumpectomy, and manages benign breast disease as well as high-risk breast cancer patients. He’s authored multiple publications on breast cancer – most recently contributing to a textbook on Ductal Carcinoma in Situ. Dr. Colfry became a healthcare provider because of the unique relationship he develops with his patients. His patients can count on him to provide extraordinary care because he wants his patients to know he’s in their corner and will guide them through this journey.
Elizabeth Ellent, MD West Jefferson Medical Center Dr. Elizabeth Ellent is a second-generation West Jefferson Medical physician following in her mother’s footsteps. She earned her medical degree from Louisiana State University Health Science Center, School of Medicine, and now specializes in Hematology and Oncology. During her training, Dr. Ellent served as Chief Medical Resident and Chief Fellow and was an instructor to medical students attending the University of Queensland Medical School, Louisiana Campus. Dr. Ellent’s expertise is in treating blood disorders and cancer, and she does so with the ultimate compassion and care for her patients. A significant focus of her practice is treating patients with breast cancer, genitourinary, and lung cancer. She partners with her patients, and their family, to develop a personalized health care plan providing the latest in medical treatments and support.
Jimmy Ellis, MD Hematology/Oncology
Scan to link to Dr. Ellis Interview
Dr. James (Jimmy) Ellis is a Medical Oncologist, Hematologist and Palliative Care physician practicing in the Greater New Orleans area. He is a 1982 graduate of LSU Baton Rouge with a B.S. in Petroleum Engineering. After working for Exxon for four years he entered LSU Medical School in New Orleans. Graduating with Honors in 1991, Dr. Ellis did a Surgery internship at Charity Hospital in New Orleans, Internal Medicine residency at Earl K. Long in Baton Rouge and a HematologyMedical Oncology fellowship with LSU in New Orleans. He has been in practice since 1998 adding Hospice and Palliative Care services in 2000. In addition to his clinical work, Dr. Ellis is an advocate for cancer patients and their families through both philanthropy and health care policy. Dr. Ellis is a native New Orleanian growing up in Old Jefferson and attending St. Agnes Parochial and Archbishop Rummel High Schools. He is the father of four wonderful daughters. He is active in fitness activities including yoga and Shotokan Karate. Dr. Elis also loves boating and fishing owning a camp in Grand Isle where he spends much of his leisure time.
George Zacharia, MD Hematologist Oncologist Touro Dr. George Zacharia specializes in Hematology and Oncology at Touro. After earning his medical degree from Louisiana State University in Shreveport, Louisiana, Dr. Zacharia completed his residency in Internal Medicine at Ochsner Clinic Foundation in New Orleans. He completed fellowships in Hematology and Medical Oncology at Lenox Hill Hospital in New York. Dr. Zacharia’s knowledge and experience in treating a variety of cancers, allows him to develop multidisciplinary treatment plans for each individual patient. He’s well-versed in clinical trials and the most advanced treatment options available. Dr. Zacharia chose to practice oncology because of the quality of relationships he is able to build with his patients. He values spending time listening to and understanding the needs and concerns of his patients and their loved ones. In this way he can truly treat the patient, and not a disease.
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Mary Maluccio, MD East Jefferson General Hospital Mary Maluccio, MD, MPH, FACS is a surgical oncologist and hepatobiliary surgeon at East Jefferson General Hospital. She is Professor of Surgery and Chief of Surgical Oncology at LSU Health. Dr. Maluccio leads the Neuroendocrine Tumor (NOLANETS) program and her passion for cancer program development focuses on marginalized patient groups. Dr. Maluccio received her medical degree from Columbia University College of Physicians and Surgeons. She completed a surgical residency at New York Presbyterian Hospital and a surgical oncology fellowship at Memorial Sloan Kettering Cancer Center in New York City. Dr. Maluccio is a renowned expert on neuroendocrine tumors. She has published widely, presented at national meetings and is actively involved with professional organizations and patient support groups. Through the challenges of the pandemic she developed relationships with hundreds of medical professionals in the South to help manage patients closer to home. She was able to expand the program infrastructure to include other rare cancers. She is relentless in her vision to overcome barriers to patient access and remains committed to bringing new imaging, new treatments and important clinical trials to New Orleans and the Gulf South.
Carrie Marquette, MD East Jefferson General Hospital Carrie Marquette, MD is a Hematology and Oncology specialist at East Jefferson General Hospital. She received her medical degree from the University of Wisconsin. After completing her residency and fellowship training at the University of Alabama in Birmingham, Dr. Marquette then earned board certifications in hematology, internal medicine and medical oncology. She now has over 15 years of experience in the medical field. Her skills and passion for the fight against cancer make her an amazing member of the multi-disciplinary cancer care team at East Jefferson General Hospital. Dr. Marquette loves being a healthcare provider because cancer care combines long term patient relationships, with novel and always evolving treatment options for people with cancer. Her patients can count on her to provide extraordinary care because she considers it a privilege to take care of patients with cancer. She enjoys getting to know her patients and their families on a personal level over the course of their treatment and recovery.
ScART (which stands for "Scar Art") is an empowering group painting experience, where participants are given the opportunity to see their scars through a new lens, using art as the tool. Every scar tells a story. See art examples, testimonials and learn more at www.scartevents.com
Shawn McKinney, MD, MPH, FACS Director, Breast Services University Medical Center, New Orleans Dr. Shawn McKinney serves as the Director of Breast Services at University Medical Center New Orleans. She is Professor of Clinical Surgery at LSU Health Science Center New Orleans. After completing her high school education in New Orleans at Ursuline Academy, she received a Bachelor of Science degree in Chemistry-PreMedicine from Xavier University of Louisiana. She attended medical school at Morehouse School of Medicine in Atlanta, Georgia, and then continued there as a surgical resident. Dr. McKinney completed a fellowship at Baylor University in Dallas, Texas, then spent 10 years at Marshall University School of Medicine in Huntington, WV, as Co-Director of the Breast Program at the Joan C. Edwards Cancer Center. There she established and accredited their breast program drawing patients from the tristate area for state-of-the-art breast cancer treatment. She completed a Master’s in Public Health with a concentration in Health Policy and Health Administration in 2018 while full time faculty at the University of Mississippi Medical Center. She is member of the American Society of Breast Surgeons, the National Coalition of Breast Centers, and a Fellow of the American College of Surgeons.
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Kendra Harris, MD, MSc Chair, Radiation Oncology Tulane University, School of Medicine "I became a radiation oncologist to bring the best in the world care to the patients in front of me. That means the latest and greatest equipment and team, access to clinical trials, a multi-disciplinary focus and strong communication so we can together set the path. A radiation oncologist is a specialized cancer doctor who administers the controlled use of radiation therapy to fight and cure cancer. Radiation therapy is a highly effective tool in treating a broad range of cancers, especially in conjunction with other treatments such as surgery and chemotherapy. A radiation oncologist is a key member of a multidisciplinary cancer team. Dr. Kendra M. Harris MD is a female radiation oncologist in New Orleans, LA with over 12 years of experience. Dr. Harris graduated from Johns Hopkins University School of Medicine in 2008. She is licensed to practice by the state board in Louisiana.
RALPH L. CORSETTI, MD, FACS Surgical Oncologist Northshore Breast Center Lakeview Regional Medical Center Dr. Corsetti is a Professor of Surgery at the Tulane University School of Medicine within the Department of Surgery with a clinical practice in surgical oncology including breast, endocrine, and melanoma surgery at Tulane's Northshore campus based at Lakeview Regional Medical Center in Covington, LA. Dr. Corsetti received his Bachelor of Arts degree graduating Magna Cum Laude from Boston University in 1987. He then earned his Doctor of Medicine degree as a Massachusetts Commonwealth Scholar from the Boston University School of Medicine in 1991.Dr. Corsetti has over 20 years of clinical experience in general surgery/ surgical oncology with a focused interest in breast, endocrine (thyroid, parathyroid, and adrenal glands), and melanoma surgery. Dr. Corsetti has had an extensive regional clinical presence in breast, endocrine, and melanoma surgery with expertise in the surgical management of breast cancer as well as benign breast disease and the high-risk breast patient. His practice also has a focus on endocrine and melanoma surgery. This includes surgical mastery of nipple sparing and traditional skin sparing mastectomy (with immediate reconstruction if desired or recommended), or breast conservation surgery (lumpectomy) with seed and reflector localization, oncoplastic breast tissue sparing and rearrangement, advanced sentinel lymph node biopsy and targeted axillary dissection, as well as minimally invasive and laparoscopic surgeries.
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Scan to link to Dr. Corsetti's Interview
DAVID N. OUBRE, M.D. Medical Oncologist Pontchartrain Cancer Center Covington, LA and Hammond, LA
Scan to link to Dr. Oubre's Interview
Dr. David Oubre founded Pontchartrain Cancer Center in Covington and Hammond in 2005. He received his medical degree from LSU School of Medicine in New Orleans, LA. He completed his residency at Earl K. Long Medical Center in Baton Rouge, followed by a fellowship in Oncology and Hematology at Wake Forest Baptist Medical Center in Winston-Salem, NC. Dr. Oubre is board certified in both Medical Oncology and Hematology. Dr. Oubre is a board member of the St. Tammany Cancer Fund, a charitable organization which provides scholarships to college students affected by cancer. He is the Louisiana representative for the State Affiliate Council for the American Society of Clinical Oncology. Dr. Oubre is the immediate past president of the President of the Louisiana Oncology Society. He was the 2019 Belles and Beaus recipient from the American Cancer Society.
MICHAEL HOLMES Chief Marketing Officer Diagnostic Imaging Services
Scan to link to Michael Holmes' Interview
Serving Southeast Louisiana and the Gulf South for nearly 50 years, Diagnostic Imaging Services (DIS) is part of Capitol Imaging Services, which is one of the largest independent radiology practices in this region. DIS is doctor trusted and patient preferred. The DIS portfolio includes critical women’s imaging including 3D mammography, breast ultrasound, breast MRI, and breast biopsies. Our highly trained and experienced women’s health radiology team takes great care in our screening and diagnostic process as we know the fight against all cancer, starts with early detection. DIS also performs our specialized prostate 3T MRI study for men who desire an alternative to biopsy. We combine the high quality scans demanded by physicians while working to lower fees for exams not covered entirely by insurance. When compared to area hospitals and medical centers, Diagnostic Imaging Services has often saved people hundreds, sometimes thousands, of dollars. Being independent, people know they save money without sacrificing the quality testing physicians need for their diagnosis. As part of the Capitol Imaging Services, DIS has locations in Covington, Marrero, Metairie, and Slidell. We offer a warm welcome, provide as pleasant an experience as possible and offer a sincere thank you to our guests for choosing us. Visit www.capitolimagingservices.com to learn more about what we do and where we do it. We see what matters.
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Genevieve Maronge, M.D. Hematology, Medical Oncologist Mary Bird Perkins Cancer Center Covington, LA Dr. Genevieve Maronge is a hematology and oncology specialist at Mary Bird Perkins Cancer Center in Covington, and is a member of Northshore Oncology Associates. Dr. Maronge received her medical degree at Louisiana State University School of Medicine in Shreveport before completing her residency at Ochsner Clinic Foundation in New Orleans. She then completed her fellowship at LSU Health Sciences Center in New Orleans. Dr. Maronge is certified by the American Board of Internal Medicine in hematology and oncology.
Scott Bermudez, M.D. Radiation Oncologist Mary Bird Perkins Cancer Center Covington, LA Dr. R. Scott Bermudez is a radiation oncologist at Mary Bird Perkins Cancer Center in Covington and Hammond, and is a member of Southeast Louisiana Radiation Oncology Group. After completing undergraduate education at Duke University, he spent a postgraduate year of study in Germany as a Fulbright Scholar. Dr. Bermudez received his medical degree from Harvard Medical School and completed his residency at the University of California, San Francisco.
Looking for support? You Night offers a variety of year-round programs for women looking for a sisterhood of support. Visit our website and click on "2023 programs" to learn more about: Empowerment programs, monthly workshops, our on-line community and annual retreat.
www.younightevents.com
Click here to watch an interview with brother and sister McLean Bergeron and Nicole Bergeron Allison
Camey Grau Ribbon Ambassador representing
Breast Cancer Survivors 034 RIBBONS 2022
Camey's Story
How did you first learn you had Breast Cancer? At the age of 19 I had my first fibrocystic lump removed from my right breast. Knowing the strong family history of breast cancer, I was always diligent about looking for changes and have had several biopsies since that first lumpectomy. My mother was diagnosed with Stage 4 metastatic Breast Cancer in 2002 and given 18 months. She lived seven years and enjoyed every day she had left with her family. Because I was considered high risk, I began a faithful regimen of testing. Every six months – mammogram and ultrasound and six months later MRI with contrast. I always knew the time would come for my own diagnosis and knew that one day I would hear the words. I was diagnosed during the height of COVID, which was a blessing in so many ways. Had I not had the MRI with contrast that year, my diagnosis would have gone undetected until the cancer had spread significantly, like my mom’s. Could you feel or see the tumor/mass, or was this something that had to be detected with a scan, etc.? What made you want to go seek an opinion? No, I could not see or feel the tumor. I was told by the doctors that the only way this would have been visible was through the MRI with contrast. It would not have shown up on a mammogram or ultrasound until it became invasive. What generally are the causes of this type of cancer (what exposure risks, lifestyle choices, etc.)? According to the Mayo Clinic, Invasive lobular carcinoma is a type of breast cancer that begins in the milk-producing glands (lobules) of the breast. Invasive cancer means the cancer cells have broken out of the lobule where they began and have the potential to spread to the lymph nodes and other areas of the body. Invasive lobular carcinoma makes up a small portion of all breast cancers. The most common type of breast cancer begins in the breast ducts (invasive ductal carcinoma). Risk Factors include: Being female. Women are more likely to develop breast cancer, but men also can develop breast cancer. Older age. Your risk of breast cancer increases as you age. Women with invasive lobular carcinoma tend to be a few years older than women diagnosed with other types of breast cancer. Lobular carcinoma in situ (LCIS). If you've been diagnosed with LCIS — abnormal cells confined within breast lobules — your risk of developing invasive cancer in either breast is increased. LCIS is not cancer but is an indication of increased risk of breast cancer of any type. Postmenopausal hormone use. Use of the female hormones estrogen and progesterone during and after menopause has been shown to increase the risk of invasive lobular carcinoma. Inherited genetic cancer syndromes. Women with a rare inherited condition called hereditary diffuse gastric syndrome have an increased risk of both stomach (gastric) cancer and invasive lobular carcinoma. Women with certain inherited genes may have an increased risk of breast and ovarian cancers. Were you shocked that you had this type of cancer? How many persons a year are diagnosed with this type of cancer? No, I was not shocked that I had this type of cancer as it was the same type of cancer that my mother had. I had been waiting for the shoe to drop because I know my strong family history. Thankfully, l I had a doctor who was vigilant and that put
put me on a regiment that would catch it before it became invasive. ILC (invasive lobular carcinoma) is the most common form of breast cancer, representing 10-15% of breast cancer diagnoses. What are the side effects that you have had to experience as a result of this cancer? I chose to take an aggressive approach for my treatment. I knew the chances of reoccurrence and the odds of my family history were too high to be conservative. After the pathology report was sent to my doctor, he said I saved my life, for without this aggressive approach, the cancer would have continued to return. I chose to have a double mastectomy with DIEP flap surgery to rebuild my breast. This involves taking fat from your belly to replace the breast tissue that is removed as well as transferring blood vessels. Nothing can truly prepare you for the event of this surgery. It is a 10 ½ hour procedure. It is hard on the body and can often come with complications that you would not think would happen. Everything from infections to the inability to make protein, to low iron levels. Additional side effects of this surgery include numbness in your abdomen and breast, bruising and swelling. This surgery changes the shape of your body and is an additional adjustment living life with cancer. Is this cancer treatable and if so, how is it treated? With Breast cancer, five years is the marker - is this the same for your cancer? This type of breast cancer begins in the milk producing glands (lobules) of the breast. In addition to surgery, some women require radiation or chemotherapy. Radiation addresses the cancer cells that are left behind. Chemotherapy is an all-over treatment to decrease the risks of recurrence elsewhere in the body and can be used together with endocrine therapy (hormonal blockade). Endocrine therapy is almost always part of the plan for treating lobular cancers. Invasive lobular carcinomas are usually strong, estrogen receptorpositive which makes them very responsive to anti-hormonal medications. I will be taking an estrogen blocker for the next 5 years. What type of doctors do you see for this type of cancer? I saw a breast oncologist surgeon, a plastic surgeon who specializes in DIEP flap reconstruction and an oncologist. When you were diagnosed, did you feel like you needed a support network, and were resources offered to you for support? At first, I needed to be alone with my diagnosis and see the doctors and come up with a plan. In less than a month from diagnosis, I was arriving at the surgery center to have my double mastectomy. I often felt lonely throughout this process as COVID was at its height. Cancer can be very isolating by itself, add on a pandemic and you are talking about another level of loneliness and depression. While I felt supported by my doctors, it still did not make the healing process and recovery a easy road. My body was not happy and gave me so many complications, some that are still unresolved to this day. I was on so many prayer lists and I know I had an army of angels watching over me. But at the end of the day, I had to find the light in the darkness and that light was hope. Hope that there would be more tomorrows, and that the next day, even in the smallest way, would be a little better than the day before.
How did You Night help you find support and why is support necessary? As I continued to struggle with the complications, I knew that my anxiety and depression were also a struggle. You Night provided a safe space to meet a group of remarkable women from all different backgrounds and cancers, that at the end of the day, could understand what I was going through. You Night was the glimmer of light in the darkness whispering to me, “Here is your hope.”
Advice to others "Cancer changes you, no matter what. You cannot deny that it does not. But like most life changing events that are often stressful and traumatic, you are faced with the opportunity to be a victim or a survivor. The road may be rocky for both, but the life you choose on that road to survivorship is the only way to live with humility and gratitude, patience, and love, and most importantly HOPE."
Scott K. Sullivan, MD, FACS Center for Restorative Breast Surgery breastcenter.com
Scan to link to Dr. Sullivan's Interview
"My hope is to enhance the quality of care to our patients by making available the most innovative and progressive treatments possible." Dr. Scott K. Sullivan is a founding partner of the Center for Restorative Breast Surgery (CRBS) and the St. Charles Surgical Hospital, the only hospital in the world dedicated to breast reconstruction for women facing breast cancer. Dr. Sullivan is one of the world's most sought-after breast reconstructive microsurgeons, and his practice is the referring destination for the most complex reconstructive challenges. He and his partners lead the way in landmark breast reconstruction techniques utilizing the body's own tissue. Dr. Sullivan received his undergraduate degree from Tulane University and graduated from LSU Health Sciences Center, where he completed his residencies in general surgery and plastic and reconstructive surgery. He is on the board of advisors for Tulane University School of Science and Engineering, a board member of BioAestheticsCorporation, a member of the advisory board for BreastCancer.org, an honorary board member of the Susan G. Komen Foundation, and a board member of You Night. He has numerous publications and lectures to his credit, with particular emphasis on the newest methods of breast reconstruction. The American Cancer Society has named Dr. Sullivan a Spirit Award Honoree and for the last six years, he has been named one of the "Best Doctors in America."
David Cabiling, MD Center for Restorative Breast Surgery breastcenter.com "I have dedicated my professional career to caring for women affected by breast cancer. My goal is to help these patients understand what is possible with the best of modern reconstructive breast surgery and to deliver results that minimize cancer's impact on their lives." Dr. David Cabiling is a board-certified plastic surgeon specializing in the most advanced methods of breast reconstruction and lymphedema surgery. Before joining the world-renowned team at the Center for Restorative Breast Surgery, Dr. Cabining practiced at the Ohio State University's breast cancer treatment center as an associate professor. Dr. Cabiling graduated with honors from Johns Hopkins University and received his medical degree from the University of Pennsylvania School of Medicine. He was a research fellow at Children's Hospital of Philadelphia before completing a plastic and reconstructive surgery residency at the University of Pennsylvania. He then completed additional training in microvascular reconstructive surgery at The University of Texas MD Anderson Cancer Center.
Frank J. DellaCroce, MD, FACS Center for Restorative Breast Surgery breastcenter.com “I continue to be humbled by the impact this work has on the women we care for and those near and dear to them. The effects of breast reconstruction can transcend the surgical techniques, providing the final link in the circle of treatment, a return to wholeness, and an overall sense of recovery.” Dr. Frank J. DellaCroce, known as Dr. D., is a founding partner of the Center for Restorative Breast Surgery and St. Charles Surgical Hospital. Board-certified in plastic surgery, Dr. D. has performed thousands of reconstructive procedures for women battling breast cancer and those choosing risk reduction surgery. He and his partners are the most sought-after breast reconstructive mircosurgeons in the world. Dr. D. received his medical degree from the LSU Health Sciences Center and completed his surgical training at the University of Texas Health Science Center and M.D. Anderson Hospital before returning to LSU to complete a fellowship in plastic surgery. Dr. D. is an honorary board member of the Susan G. Komen Foundation and serves on the advisory board for BreastCancer.org, FORCE, and IamTakingCharge. He has been named one of the “Best Doctors in America” for six consecutive years.
Stacy R. Henderson, MD
Center for Restorative Breast Surgery breastcenter.com “I am focused on providing an exceptional experience and result for women otherwise going through one of the most difficult times in their lives. As a woman, I understand the sense of wholeness one can achieve through breast restoration.” Dr. Stacy R. Henderson is a board-certified plastic surgeon and fellowship-trained microsurgeon. She specializes in the most advanced methods of breast reconstruction with the team of world-renowned surgeons at the Center for Restorative Breast Surgery and the St. Charles Surgical Hospital. Dr. Henderson graduated with honors from Tulane University and received her medical degree from the Indiana University School of Medicine in Indianapolis. She completed a residency in integrated plastic surgery at the Pennsylvania State University Hershey Medical Center and a fellowship in microsurgical breast reconstruction surgery at the University of Pennsylvania. She has authored articles for publication in medical journals, including Plastic and Reconstructive Surgery, published several book chapters and educational modules, and made presentations at national meetings. Dr. Henderson has also participated in medical missions to Nicaragua and Costa Rica. 038 RIBBONS 2022
Christopher G. Trahan, MD Center for Restorative Breast Surgery breastcenter.com “I believe the attention to detail gives women the best possible outcomes and a complete sense of well-being. I am dedicated to making women feel whole again without sacrificing that which makes her feel like a woman.” Dr. Christopher G. Trahan is part of a world-renowned team pioneering revolutionary breast reconstruction techniques at the Center for Restorative Breast Surgery and St. Charles Surgical Hospital. He is board certified in plastic and reconstructive surgery and otolaryngology. Dr. Trahan graduated with honors from LSU and received his medical degree from LSU Medical School. He served his internship in general surgery and residency in otolaryngology – head and neck surgery, both at LSU Health Sciences Center, followed by a plastic and reconstructive surgery fellowship at the University of Nebraska Medical Center. Dr. Trahan is a member of the American Medical Association and has published numerous scientific articles and abstracts in medical journals and made presentations at national conferences. Dr. Trahan has been named one of the “Best Doctors in America.”
Matthew Whitten Wise, MD, FACS Center for Restorative Breast Surgery breastcenter.com “As a surgeon, I understand that technical skills are not enough. We must provide the total care of a woman, supporting her through the anxiety and emotions, as well as the treatment and surgery.” Dr. Whitten Wise is part of a world-renowned team pioneering revolutionary breast reconstruction techniques at the Center for Restorative Breast Surgery and St. Charles Surgical Hospital. He has performed over 2500 advanced microsurgical and other reconstructive and aesthetic procedures in the New Orleans region since 2005. Dr. Wise graduated from Duke University and received his medical degree from the University of South Alabama in Mobile. He served his internship and general surgery residency at LSU Health Sciences Center, followed by an additional residency in plastic surgery at the Cleveland Clinic. He is a member of the Association of Academic Chairmen in Plastic Surgery and the Cohn-Rives Society. He has presented numerous papers and lectures at seminars and national conferences and published book chapters, journal articles, and abstracts.
Mary Jo Wright, MD, FACS Center for Restorative Breast Surgery breastcenter.com “I long discovered a passion for helping women restore self-image, regain confidence, and feel whole again. I aim to provide women with the compassionate and quality care they deserve.” Dr. Mary Jo Wright is a board-certified breast surgical oncologist and plastic surgeon specializing in breast reconstruction at the Center for Restorative Breast Surgery and the St. Charles Surgical Hospital alongside the distinguished group of pioneering surgeons sought out from all over the world for their revolutionary techniques. Dr. Wright graduated from Vanderbilt University and received her medical degree from the St. Louis University School of Medicine. She completed an internship and residency in general surgery at LSU Medical Center before serving three fellowships—trauma/critical care at the University of Texas Southwestern in Dallas, breast cancer surgery at Memorial Sloan-Kettering in New York, and plastic and reconstructive surgery at Tulane University Health Sciences Center. Dr. Wright also served in the United States Army Reserve during Operation Enduring Freedom/Operation Iraqi Freedom and served as commander of the 1st Forward Surgical Team in Iraq in 2003. Later, in 2009, she served as chief of surgery of the 945th Forward Surgical Team while on active duty in the United States Army. She resigned from the military with the rank of colonel. In 2003, Dr. Wright received a Bronze Star Medal and five honorary military coins from the United States Army for her meritorious service. She also received the American Cancer Society Spirit Award.
William Karl Ordoyne Jr., MD, FACS Center for Restorative Breast Surgery breastcenter.com
“The treatment of breast cancer is continually changing, allowing for more choices for each woman. I share a steadfast commitment to each patient I treat from diagnosis through treatment and into survivorship.” Dr. William Karl Ordoyne is a surgical breast oncologist and a member of the world-renowned team of doctors at the Center for Restorative Breast Surgery and the St. Charles Surgical Hospital. Board-certified in surgery, he has over 20 years of experience in surgical oncology and specializes in breast cancer care. Dr. Ordoyne received his medical degree from LSU School of Medicine. He completed a general surgery internship and residency at the Alton Ochsner Medical Foundation, serving as the administrative chief of surgery resident. He then completed a fellowship in surgical oncology at the University of Illinois in Chicago. Dr. Ordoyne is a fellow of the American College of Surgeons and has published numerous articles dedicated to advancing cancer treatment.
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Sarosh Zafar, MD
Center for Restorative Breast Surgery breastcenter.com "Women facing breast cancer encounter more than the medical aspect of it; they must also face the disease's physical, emotional, and psychological demands. I want to take the time to meet each woman where she is and work with her to get her where she wants to go. I strive to treat each woman as I would want my mother or sister to be treated." Dr. Sarosh Zafar is a double board-certified microsurgeon in plastic and reconstructive surgery and general surgery. She specializes in the most advanced methods of breast reconstruction, complex reconstruction, and microsurgery alongside the world-renowned team of pioneering surgeons at the Center for Restorative Breast Surgery and the St. Charles Surgical Hospital. Dr. Zafar graduated with honors from Villanova University and earned her medical degree from Drexel University College of Medicine, where she also completed a residency in general surgery. She then completed a residency in plastic surgery at Houston Methodist Hospital in The Texas Medical Center and a fellowship in microsurgery at the University of California, San Francisco. Dr. Zafar is widely published in the field of post-mastectomy breast reconstruction and has served as a surgeon for Operation San Jose, providing humanitarian cleft lip and palate care for patients in Chihuahua, Mexico.
Alan Stolier, MD, FACS Center for Restorative Breast Surgery breastcenter.com “Medical advancements in research and technology have presented more options for breast cancer treatment today. I am pleased to be at least a small part of these advancements allowing us to develop the most appropriate plan for each woman. Together we can anticipate resounding results.” Dr. Alan Stolier, MD, FACS, has over 35 years of experience in surgical oncology. He has a particular interest in breast cancer genetics and the associated care of women with the BRCA genetic mutation. He received his medical degree from LSU School of Medicine. Following his surgical internship at the University of Virginia Hospital and residency in general surgery at Charity Hospital of Louisiana, he completed fellowships in surgical oncology at MD Anderson Cancer Institute and Hammersmith Hospital in London, England. He is a fellow of the American College of Surgeons and a member of numerous societies, including the American Society of Breast Disease and the American Society of Breast Surgeons. He also serves on the Professional Advisory Board of breastcancer.org
Support communities Sisters of Amazing Resiliency (SOAR) is an online private Facebook support community open to any woman diagnosed with any type of cancer and at any stage of the journey..
"You Night Triple Negative Breast Cancer Support and Advocacy Group" A small Private Facebook Group based in New Orleans and St. Tammany "You Night Mets Support Group" A small Private Facebook Group based in New Orleans and St. Tammany
DIEP FLAP Support Group an information resource and support network for women+ who are having, have had or are considering autologous Flap Reconstruction. Triple Negative Breast Cancer Support (For women ONLY with TNBC an online support community for early stage TNBC (Stages 0-3) Blessing Box Project (provides pillow and shirt with drain pockets for women getting mastectomies - free of charge) www.blessingboxproject.com
Survivor's Cancer Action Network (SCAN) Join SCAN to use your voice in legislation to improve the patient experience. www.scan-la.org ScART (Scar Art Painting Experience) A healing group experience using paint to portray surgical or emotional scars. www.scartevents.com
SPARK "We help women find a path forward after a diagnosis." Spark offers free monthly workshops. sparkworkshops.net You Night's Story Crafting Community: A six-week on-line small group program where participants deconstruct a traumatic experience and reconstruct it into a powerful anthem using story writing as a tool.
Finding HUMOR After Breast Cancer a Facebook group for women who are in all stages of treatment or recovery from breast cancer, intended to bring us a little humor relief.
Note: There are hundreds of groups that cater to different personalities, cancer types and cancer journeys. We recommend you seek out ones that interest you. Sign up, introduce yourself and see if the group is a good fit for you. The best way to find support is to take an active step in getting involved.
Dr. Ali Sadeghi Plastic & Reconstructive Surgery Sadeghi Center for Plastic Surgery www.sadeghiplasticsurgery.com
Scan to link to Dr. Sadeghi's Interview
Dr. Ali Sadeghi is a double board-certified plastic and reconstructive surgeon specializing in microsurgical breast reconstruction and cosmetic plastic surgery. Dr Sadeghi completed his surgical residency training in New York and his plastic and reconstructive surgery subspecialty training in New Orleans at Louisiana State University. He has dedicated his career to advancing the field of microsurgical breast reconstruction and has performed thousands of breast reconstructive surgeries during his career to be reconsidered a leader in the field of reconstructive breast surgery. Dr Sadeghi is nationally known for his expertise in the field of reconstructive breast microsurgery and has been extensively published in this field. Dr. Sadeghi’s practice serves the greater New Orleans as well as Baton Rouge and the Northshore area. Dr. Sadeghi recently expanded his practice to a new office location on Metairie Road, to house his medical practice as well a brand-new surgical facility and his new MedSpa, the Spa by Sadeghi. At this new facility, Dr Sadeghi has established a practice dedicated to the complete care of all his patients. Dr Sadeghi and his staff are committed to providing compassionate and one-on-one care in a welcoming environment, coupled with cutting-edge surgical techniques to achieve beautiful results in aesthetic and restorative breast surgery.
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Breast Cancer Most common types of breast cancer Ductal or lobular carcinoma Ductal carcinoma in situ (DCIS; also known as intraductal carcinoma) is a non-invasive or preinvasive breast cancer. Invasive (or infiltrating) breast cancer has spread into surrounding breast tissue. The most common types are invasive ductal carcinoma and invasive lobular carcinoma. Invasive ductal carcinoma makes up about 70-80% of all breast cancers. Triple-negative breast cancer Triple-negative breast cancer is an aggressive type of invasive breast cancer in which the cancer cells don’t have estrogen or progesterone receptors (ER or PR) and also don’t make any or too much of the protein called HER2. (The cells test "negative" on all 3 tests.) It accounts for about 15% of all breast cancers and can be a difficult cancer to treat. Inflammatory breast cancer Inflammatory breast cancer is an aggressive type of invasive breast cancer in which cancer cells block lymph vessels in the skin, causing the breast to look "inflamed." It is rare and accounts for about 1% to 5% of all breast cancers. SOURCE: https://www.cancer.org/cancer/breastcancer/about/types-of-breast-cancer.html
Less common types of Breast Cancer: Paget disease of the breast Paget disease of the breast is rare, accounting for only about 1-3% of all cases of breast cancer. It starts in the breast ducts and spreads to the skin of the nipple and then to the areola (the dark circle around the nipple). Phyllodes tumor Phyllodes tumors are rare breast tumors. They develop in the connective tissue (stroma) of the breast, in contrast to carcinomas, which develop in the ducts or lobules. Most are benign, but there are others that are malignant (cancer). HER2 About 15% to 20% of breast tumors have higher levels of a protein known as HER2. These cancers are called HER2positive breast cancers. HER2 is a protein that helps breast cancer cells grow quickly. Breast cancer cells with higher than normal levels of HER2 are called HER2-positive. These cancers tend to grow and spread faster than breast cancers that are HER2-negative, but are much more likely to respond to treatment with drugs that target the HER2 protein.
RISK FACTORS YOU CAN'T CHANGE: Getting older. Most breast cancers are diagnosed after age 50. Genetic mutations. Women who have inherited changes (mutations) to certain genes, such as BRCA1 and BRCA2, are at higher risk of breast and ovarian cancer. Reproductive history. Starting menstrual periods before age 12 and starting menopause after age 55 expose women to hormones longer, raising their risk of getting breast cancer. Having dense breasts. Dense breasts have more connective tissue than fatty tissue, which can sometimes make it hard to see tumors on a mammogram. Women with dense breasts are more likely to get breast cancer. Personal history of breast cancer or certain non-cancerous breast diseases. Women who have had breast cancer are more likely to get breast cancer a second time. Some non-cancerous breast diseases such as atypical hyperplasia or lobular carcinoma in situ are associated with a higher risk of getting breast cancer. Family history of breast or ovarian cancer. A woman’s risk for breast cancer is higher if she has a mother, sister, or daughter (first-degree relative) or multiple family members on either her mother’s or father’s side of the family who have had breast or ovarian cancer. Having a first-degree male relative with breast cancer also raises a woman’s risk.
The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
National and Local Resources for Support Located in New Orleans and St. Tammany, You Night is a sisterhood of support for women diagnosed with all cancers. (Pictured: Members of the You Night Sisterhood at one of the organization's emotional healing programs. www.younightevents.com
The TNBC Foundation is a national nonprofit that offers resources, including virtual meet ups for women diagnosed with Triple Negative Breast Cancer. www.tnbcfoundation.org
The National Breast Cancer Foundation offers a variety of support programs for women diagnosed with cancer, including Hope Kits to send to those who are battling a diagnosis. www.nationalbreastcancer.org METAvivor is dedicated to the specific fight of women and men living with stage 4 metastatic breast cancer. www.metavivor.org
Ravi Tandon, MD Plastic Surgery Tandon Plastic Surgery
Support groups help improve the healing process and help patients feel safe and more empowered with managing their own recovery.
Scan to link to Dr. Tandon's Interview
Dr. Ravi Tandon is a board certified, and fellowship trained plastic and reconstructive surgeon with over 10 years of experience helping patients regain their confidence. After receiving his medical degree from Vanderbilt University in Nashville, Dr. Tandon completed a general surgery residency at Tulane in New Orleans. He continued his training in plastic and reconstructive surgery in New York City, finishing a prestigious reconstructive microsurgery fellowship at NYU Medical Center. He then returned to Nola in 2015 with his wife, and now children. Dr. Tandon’s intensive training and compassionate care has made him one of the most sought-after plastic surgeons in the region. While he performs a variety of cosmetic procedures, his passion truly lies in breast reconstruction and restoring breasts to their natural appearance for women who’ve undergone a mastectomy. He is also an active member of the American Society of Plastic Surgeons and American Society of Reconstructive Microsurgery.
What is Breast Cancer? Cancer is a disease in which cells in the body grow out of control. Except for skin cancer, breast cancer is the most common cancer in women in the United States. Deaths from breast cancer have declined over time, but breast cancer remains the second leading cause of cancer death among women overall and the leading cause of cancer death among Hispanic women. Each year in the United States, about 264,000 cases of breast cancer are diagnosed in women and about 2,400 in men. About 42,000 women and 500 men in the U.S. die each year from breast cancer. Black women have a higher rate of death from breast cancer than White women. Breast cancer is a disease in which cells in the breast grow out of control. There are different kinds of breast cancer. (Source: Center for Disease Control)
Signs & Symptoms Like all cancers, early detection is key. If you have any signs or symptoms that are of concern, please make an appointment with your family practitioner or gynecologist right away.
Dr. Jules Walters The MODERN Plastic Surgery & Medspa Board Certified Plastic Surgeon www.themodernnola.com
Scan to link to Dr. Walter's Interview
Certified by both the American Board of Plastic Surgery and the American Board of Surgery, Dr. Jules Walters brings years of experience and specialized training into his practice. After completion of his general surgery residency, Dr. Walters completed a highly coveted three-year plastic surgery residency at the University of Texas at Houston, training in the prestigious Texas Medical Center. He trained at one of the top cancer centers in the world, MD Anderson Cancer Center, as well as Memorial Hermann Hospital, consistently recognized as one of the busiest trauma hospitals in the country. Dr. Walters specializes in the latest techniques in facial, breast, and body aesthetic surgery. His practice also offers nonsurgical and minimally invasive facial rejuvenation. His knowledge and passion for creating customized, natural results combined with his compassionate, personal outlook made him this year’s Top Plastic Surgeon of choice in the Greater New Orleans Area by CityBusiness Magazine. The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
Dr. Trey Sands SANDS Aesthetics + Plastic Surgery Metairie, Louisiana www.drtreysands.com
Scan to link to Dr. Sands' Interview
Dr. Sands has been in practice for over ten years as a Board-Certified Plastic Surgeon, specializing in body contouring procedures, breast cancer reconstruction and non-surgical facial rejuvenation. He has earned titles as Chief of Plastics at East Jefferson General Hospital and Associate Clinical Lead in Plastic Surgery at Tulane Hospital. For people who want to move through the world with the confidence that comes when the physical self reflects the inner self, Dr. Sands is a board-certified plastic surgeon who focuses on body contouring and nonsurgical facial rejuvenation with over a decade of experience. Dr. Sands takes a highly curated, personal approach with each individual and is actively paving the way for a more personalized experience. SANDS champion our clients, cheering them on throughout their entire journey, because we believe in the transformative power of our craft. For Dr. Sands, our world would be a better place if humans felt empowered to embody their truest self in their daily lives. SANDS was born out of the earnest desire to help others feel comfortable in their skin. We are different because we sit side by side with our clients like family, listening with empathy and without judgment, only recommending what is best for them to reach their goals. We respect you and we’re here for you every step of the way.
Methods of detecting breast cancer Blood tests, such as a complete blood count. Mammogram of the other breast to look for signs of cancer. Breast MRI. Bone scan. Computerized tomography (CT) scan. Positron emission tomography (PET) scan.
How is breast cancer treated? Most women with breast cancer in stages I, II, or III are treated with surgery, often followed by radiation therapy. Many women also get some kind of systemic drug therapy (medicine that travels to almost all areas of the body). In general, the more the breast cancer has spread, the more treatment you will likely need.
Risks factors you can change: Not being physically active. Women who are not physically active have a higher risk of getting breast cancer. Being overweight or having obesity after menopause. Taking hormones. Some forms of hormone replacement therapy (those that include both estrogen and progesterone) taken during menopause can raise risk for breast cancer when taken for more than five years. Reproductive history. Having the first pregnancy after age 30, not breastfeeding, and never having a full-term pregnancy can raise breast cancer risk. Drinking alcohol. Studies show that a woman’s risk for breast cancer increases with the more alcohol she drinks. The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
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Capital Imaging Services (dba Diagnostic Imaging Services) celebrates the sisters of You Night and life beyond a cancer diagnosis. Reach out and we'll be there to serve our communities in the fight against breast cancer.
3D Mammography Diagnostic Mammography Ultrasound Breast Ultrasound DEXA Bone Density Studies Breast MRI Stereotactic Breast Biopsy Ultrasound Breast Biopsy Hysterosalpingography Galactography Cyst Aspiration Designated as a "Breast Imaging Center of Excellence" Breast Cancer Screenings completed in 20 minutes (average screening time) Offering Saturday morning appointments for further convenience Advanced diagnostic studies include specialty breast biopsy and hysterosalpingograms Wonderful care from our technologists - gentle, calm and reassuring Save money when having exams not fully covered by insurance and subject to a deductible
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Mastectomy patients traditionally have had few options for replacing their nipples. Tattoos and prosthetics have helped, but new research and techniques – as well as organ and tissue donors like you – soon may give recovering patients another, more permanent, option: growing back their own. Through its partnership with organizations such as Louisiana Organ Procurement Agency (LOPA), the federally designated, nonprofit organ and tissue recovery agency for the state of Louisiana, a biomaterials company with roots at Tulane University is pioneering better reconstruction options for patients who suffered nipple loss due to breast cancer-related mastectomies and injuries. Their inaugural project, known as the Nipple-Areola Complex (NAC) Graft, returns to patients something they lost: a natural, living nipple and areola.
BioAesthetics, founded in 2015, is committed to developing better reconstruction options for patients who have suffered nipple loss. The NACgraft™ Acellular Allograft revolutionizes options for patients by offering a lasting solution for reconstruction by using the nipple-areolar complex recovered from a deceased organ and/or tissue donor.
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Through a process known as decellularization, the cells of the donor are removed from the donor nipple and areola. What is left behind serves as a cell-free and DNA-free graft which can be sutured onto a patient’s chest. The graft acts as a type of scaffolding, or frame, and provides the foundation for a patient’s body to regenerate the nipple, allowing the patient’s own cells to grow into the graft and transform it into a living part of the patient’s reconstructed breast.
Because the nipple is living tissue, it looks and feels as natural as a patient’s own once did. Research has shown that nipple reconstruction plays a significant role in the patient’s quality of life, including self-esteem, image and psychological well-being.
For more information, please visit bio-aesthetics.com.
BioAesthetics is currently conducting clinical studies of the NACgraft and anticipates it becoming publicly available by the end of 2022. The first clinical study is being conducted at Stanford Medical and follows 15 patients, over a 12 month period, who have undergone primary breast reconstruction following breast cancerrelated mastectomy without radiation. The study began in late 2021. A second clinical trial was recently announced and will be conducted at the Center for Restorative Breast Surgery, located in New Orleans, LA, and San Francisco Plastic Surgery, located in San Francisco, CA. This study will include a broader patient population, including both male and female patients, breast cancer patients with, or without, radiation, and non-breast cancer patients. This study was just launched and is actively recruiting roughly 36 patients. The primary objective of the studies is evaluating patients’ healing time. Secondary objectives include assessing patients’ satisfaction and their psychological well-being, as well as studying the new nipples dimensions and sensitivity. With the NACgraft, BioAesthetics aims to help patients achieve their desired results and improve their quality of life. For more information, please visit bio-aesthetics.com. LOPA has had the honor of working with BioAesthetics since 2017, recovering the NAC to assist in their groundbreaking research. “LOPA was one of our first NAC recovery partners and has been supportive of the NACgraft from the beginning,” said Nicholas Pashos, PhD, CEO of BioAesthetics. “The partnership has been important in translating the NACgraft from bench to bedside.”
Photo Credit: bio-aesthetics.com
In addition to our research partnership, LOPA has been lucky enough to have Nick Pashos, along with BioAesthetics’ COO Billy Heim as guests on our podcast, The Gifted Life, twice in recent years. Their first appearance on the podcast (episode 104) was originally released March 15, 2019. In this episode, you’ll hear Nick and Billy share the journey that led them to focus their efforts on the NACgraft. Their second appearance (episode 156) was originally released March 12, 2021, when they provided exciting updates to the important work BioAesthetics is doing to aid in the reconstruction process for patients. You can access these, and many other episodes of The Gifted Life Podcast, at thegiftedlife.org or anywhere you listen to podcasts.
(BIOESTHETICS, CONT'D) It is always put into perspective when we can see the outcome of our hard work. This became evident of our partnership with BioAesthetics several years ago when LOPA became a sponsor of You Night. It makes us proud to know we played – and will continue to play – a small part in helping the amazing women of You Night continue their journey and live life to the fullest. “For me it is important being able to give back to a local group that provides such great support to our community,” said LOPA CEO Kelly Ranum. LOPA has been committed to medical research for many years and it is through our core purpose of Making Life Happen that we continue to look for new ways to help advance medical breakthroughs. First and foremost, research would not be possible without the selfless gifts of so many who said yes to donating organs and tissues for the purpose of transplantation and medical research. LOPA’s Family Advocates walk the family through the authorization and donation process and support them through their grief journey. It is during this difficult time that families generously agree to allow research tissue to be recovered. LOPA’s research team, led by Tina Madere, works tirelessly to make sure we do not miss an opportunity to recover research tissue when a family has graciously and selflessly authorized these gifts. Saying yes to registering as a donor is more than just saying yes to donation. It is saying yes to giving people a second chance at life. It is saying yes to leaving a legacy. It is saying yes to becoming someone’s hero. It is saying yes to helping your fellow man and it is saying yes to being a part of medical history through your Scan here to watch LOPA selfless decision. CEO Kelly Ranum's interview If you would like to sign up to be a donor or learn more about donation, please visit www.lopa.org
Shanta Burns
Pink, Teal and Lime Ribbon Ambassador representing
Metastatic Breast Cancer Survivors
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Shanta's Story
How did you first learn you had Metastatic Breast Cancer? I was diagnosed de novo, which means my breast cancer was first diagnosed and had already spread outside of the breast to other parts of the body. I had spots in my breast, lungs and bones. Could you feel or see the tumor/mass, or was this something that had to be detected with a scan, etc.? I saw the physical changes with my breast. It appeared to be swollen and had the peau d’orange appearance which means it looked like an orange peel, and my nipple was inverted. What made you want to go seek an opinion? I knew what I was seeing wasn’t normal, so I made an appointment with my GYN doctor. What generally are the causes of this type of cancer (what exposure risks, lifestyle choices, etc.) The textbook answer is family history and genetics, smoking, alcohol use, obesity, radiation exposure and hormone replacement therapy. The only one of these answers that was true to me was the obesity. I was under the age of 40 with no family history. Were you shocked that you had this type of cancer? I was in total shock! When I heard the word “cancer” all I could think of was that I was dying. How many people a year are diagnosed with this type of cancer? Over 2 million women were diagnosed with breast cancer in 2020, of that 6% have Metastatic Breast Cancer when first diagnosed. The median age of diagnosis is 62, but the number of women diagnosed under age 40 is increasing. Although black women are diagnosed less often with breast cancer, they have a 41% higher death rate from the disease. What are the side effects that you have had to experience as a result of this cancer? Side effects that I have experienced are: alopecia, numbness in my finger tips and toes, diarrhea, nausea, darkening of the hands and soles of my feet, and skin dryness.
Is this cancer treatable and if so, how is it treated? With Breast cancer, five years is the marker - is this the same for your cancer? The difference between Metastatic Breast Cancer and other types is that the care is palliative which means this type of care is focused on preventing progression and providing relief from symptoms. What type of doctors do you see for this type of cancer? My medical team consist of: Medical Oncologist, Primary Care Physican, Endocronoligist and a host of dedicated nurses and ancillary staff. When you were diagnosed, did you feel like you needed a support network, and were resources offered to you for support? When first diagnosed, I could not think past my own diagnosis. Luckily, I had a group of friends and family that were very supportive, but I didn’t think to look outside for other support groups. How did You Night help you find support and why is support necessary? You Night gave me the support that I didn’t know I needed. The ladies became my tribe of sisters that understood my journey. If I’m not feeling well, they understand. Its strange because they get it - the emotional and physical struggles because they too have endured the walk. Scan to see Shanta's Interview
"My advice to others is to know your body.
Do your monthly breast exams, if something isn’t right seek medical advice. If you do have to endure this walk, remember you are not alone. There are a host of other women of all ages, backgrounds and ethnicities that are here to support you along the way. Seek support and find your tribe!"
What is Metastatic Breast Cancer? Metastatic breast cancer is the most advanced stage of breast cancer. Breast cancer develops when abnormal cells in the breast start to divide uncontrollably. A tumor is a mass or collection of these abnormal cells. Metastatic cancer is commonly called stage IV cancer or advanced cancer. It occurs when cancer cells break off from the original tumor, spread through the bloodstream or lymph vessels to another part of the body, and form new tumors. Nearby lymph nodes are the most common place for cancer to metastasize.
Among the study population, we found that bone was still the most common site of metastasis for breast cancer (65.1%, including single and multiple metastatic sites), followed by lung (31.4%), liver (26.0%) and brain (8.8%) metastasis. No one would say that living with metastatic breast cancer is easy. It can be treated, but it cannot be cured. However, many people with metastatic breast cancer can live long lives with excellent quality of life. More and more women and men are living with breast cancer as a chronic disease. www.scientificanimations.com, CC BY-SA 4.0 <https://creativecommons.org/licenses/by-sa/4.0>, via Wikimedia Commons
Image Source: https://massivebio.com/breast-cancer-stage-4/
Treatment Hormonal therapy is considered the standard initial treatment for HER2-negative metastatic breast cancer that is also hormone receptorpositive. It is often given in combination with targeted therapy. However, chemotherapy may also be given. A clinical trial may also be an option for treatment at any stage.
The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
Sherry Heller Pink and Black Ribbon Ambassador representing
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Triple Negative Breast Cancer Survivors
I was always diligent about getting my annual mammogram, even though I had no family history of breast cancer. At my appointment in the Spring of 2019, the staff asked if I wanted a 3D mammogram, as it was now covered by my insurance. I am not sure if that level of imaging is what allowed them to see the tumors or not, however, the radiologist saw something suspicious, and I was scheduled for a biopsy. I was on a work trip when the nurse called. I remember I was sitting in my rental car getting ready to go have breakfast with a friend who lived in the area. When she told me I went numb, then I said to myself, go have breakfast and enjoy yourself, let this be your last cancerfree moment. After that, I called my husband and two close friends who had just been through breast cancer treatment and my journey begun. Could you see or feel the tumor? I could not see or feel the tumor, even after the mammogram. This was simply an annual mammogram. I am very glad that I have the health insurance that covers the cost of annual check-ups. This is something that should be universal for all women. What was your reaction to finding out you had this type of cancer? I was shocked that I had breast cancer, especially as I was considered low risk. Heck, I even breastfed! After the diagnosis, I had genetic testing done to see if I had a mutation in of the two genes (BRCA1 and BRCA2) protect people from breast cancer. Having the mutation is associated with a risk of breast cancer. I have two daughters and three sisters, and I wanted to provide them with this information in case they may also have the gene. I did not have the gene. I did not fully realize that there were different types of breast cancer with different types of treatment. When you first get diagnosed, you are in shock and there is an abundance of information to absorb and many decisions to make. I was fortunate to have an incredible breast surgeon and oncologist at Ochsner Tansey Breast Center and Benson Cancer Center. They drew pictures, diagramed options, and answered my questions in terms I could understand. My husband was with me at every appointment and treatment. It was incredibly helpful to have someone else listening, asking questions, and contemplating options with me.
What generally are the causes of this type of cancer? "Several studies suggest that being premenopausal or of African ancestry increases your risk of developing basal-like or triple-negative breast cancer. Among African-American women who develop breast cancer, there is an estimated 20 to 40 percent chance of the breast cancer being triple-negative. Researchers do not yet understand why premenopausal women and women in some ethnic groups have higher rates of triple-negative breast cancer than other groups of women." (Source: TNBC Foundation website). How many persons a year are diagnosed with this type of cancer? What is the age range? How many women? Triple negative breast cancer occurs in about 10-20% of diagnosed breast cancers and is more likely to affect younger
Sherrys Story people, African Americans, Hispanics, and/or those with a BRCA1 gene mutation. However, I fit none of those categories as a 50-year-old white woman without the BRCA1 gene mutation. What are the side effects that you have had to experience as a result of this cancer? During the chemo treatment I lost all my hair and struggled with the typical side effects of nausea, fatigue, muscle pains, brain fog. Unfortunately, I also developed blood clots in my right leg and lungs – something that is neither common nor uncommon when receiving chemotherapy. The blood clots led to a heart attack, and I continue to receive treatment for my now compromised heart and will be on blood thinners for life. I also had a unilateral mastectomy. I chose to have DIEP flap surgery to rebuild my breast. This involves taking fat from your belly to replace the breast tissue that is removed. Interestingly, this surgery also removes your belly button and creates a new one - so I have a new navel! The side effects of this surgery involve numbness in my belly, breast, and across my back where some additional tissue had to be taken. It feels like I was taken out of my old body and put into someone else’s body. My shape has changed, my go to clothing styles that matched my body type don’t quite work anymore. Although to everyone around me I look the same (at least that is what they tell me!). What type of doctors do you see for this type of cancer? For the cancer I saw an oncologist who specialized in treating breast cancer. I saw a breast surgeon for the mastectomy. And a plastic surgeon for rebuilding the breast. Now I also have a cardiologist. When you were diagnosed, did you feel like you needed a support network, and were resources offered to you for support? At first, I needed to absorb the diagnosis and so the first week or two, I was focused on making decisions about treatment and only reached out to a few close friends who had been through breast cancer. They where able to support me emotionally and with information. I also felt like the doctors and staff at Ochsner provided me with a great deal of information. Then, I created a Facebook page called Bosom Buddies and invited friends and family who I knew would be positive and supportive. It was also a way to keep everyone updated on my treatment and progress without having to make multiple calls and texts. This turned into a great support system for me. I also found a few Facebook pages specifically for individuals with TNBC and those were helpful (although sometimes scary or overwhelming so I limited my time on them). I really focused on healing myself and getting though the treatment and surgeries.
Is this cancer treatable and if so, how is it treated? With Breast cancer, five years is the marker - is this the same for your cancer? “The type of breast cancer is determined by the presence or absence of receptors, proteins that live inside or on the surface of a cell and bind to something in the body to cause the cell to react. You may have heard of the estrogen receptor (ER), progesterone receptor (PR) and human epidermal growth factor receptor 2 (HER2). Triple negative breast cancer lacks all three of these receptors which is how it gets its name. In estrogen receptor-positive breast cancer, progesterone receptor-positive breast cancer and HER2-positive breast cancer, treatment includes medicines that prevent, slow or stop cancer growth by targeting those receptors. But triple-negative breast cancers (TNBC) need different types of treatments because they are estrogen receptor-negative, progesterone receptor-negative and HER2-negative. Medicines like Tamoxifen, which targets the estrogen receptor, and Trastuzumab (Herceptin), which targets HER2, are not helpful in treating triple-negative breast cancer. Instead, chemotherapy has been shown to be the most effective treatment for triple-negative breast cancer.” from the TNBC Foundation Website Triple negative breast cancer can be more aggressive and difficult to treat. Also, the cancer is more likely to spread and recur. The stage of breast cancer and the grade of the tumor will influence your prognosis. Research is being done currently to create drug therapies that are specific for triple negative breast cancer. With triple-negative breast cancer, the risk of a metastatic recurrence, the breast cancer coming back outside the breast, is strongest in the first five years after your diagnosis. Most women with triplenegative breast cancer never have a metastatic recurrence or a new cancer. How did You Night help you find support and why is support necessary? After I was done with treatment and began what I really thought of as my survivorship journey, my focus shifted from the here and now – getting through treatment – to what next. That is when I begin to struggle with anxiety and depression. You Night provided me with a way to reconnect with a love of life and joy in myself and who I am. It was the perfect next step for me.
A cancer journey, especially breast cancer which involves our sense of selves as female and the impact can be so obvious physically, is a very personal journey. What makes sense for one person may not be the answer for the next person. I sought out and spoke to many breast cancer survivors as I made my decisions. I listened and considered their perspectives, and then I used that information to help me decide what was best for me.
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What is Triple Negative Breast Cancer? Triple-negative breast cancer (TNBC) is that which tests negative for three receptors: estrogen, progesterone, and human epidermal growth factor receptor 2 (HER2). It is also the least common form of breast cancer and the hardest to treat. TNBC) affects about 13 in 100,000 women each year.
(
Researchers don't know what causes TNBC, but they think BRCA1 genetic mutation might play a part. The BRCA1 gene is meant to prevent cancer. When it mutates, however, the gene reverses course and makes your cells more vulnerable to cancer. TNBC is one of the most challenging breast cancers to treat. But researchers are making steady progress toward more effective treatments. Overall, 77% of women who have triple negative breast cancer are alive five years after diagnosis. Image credit: Bay Biosciences
Signs & Symptoms Like all cancers, early detection is key. If you have any signs or symptoms that are of concern, please make an appointment with your family practitioner or gynecologist right away. What are symptoms of triple negative breast cancer (TNBC)? A new lump or mass. Swelling in all or part of a breast. Dimpled skin. Breast or nipple pain. Nipple retraction, when your nipple turns inward. Nipple or breast skin that's dry, flaking, thickened or red. Nipple discharge that is not breast milk.
Creative Common License: Patrick J. Lynch, illustrator,
Methods of detecting TNBC The BRCA gene test is a blood test that's done to determine if you have changes (mutations) in your DNA that increase the risk of breast cancer. Mutations in either breast cancer gene — BRCA1 or BRCA2 — significantly increase the risk of: Breast cancer. Male breast cancer. The test can be ordered by a healthcare practitioner or genetic counselor. The sample will be sent to a laboratory that specializes in BRCA mutation testing.
How is TNBC breast cancer treated? Most women with breast cancer in stages I, II, or III are treated with surgery, often followed by radiation therapy. Many women also get some kind of systemic drug therapy (medicine that travels to almost all areas of the body). In general, the more the breast cancer has spread, the more treatment you will likely need.
The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
Renee Girault-Branch Teal and White Ribbon Ambassador representing
Cervical Cancer Survivors
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Renee's Story
How did you first learn you had cervical cancer? I learned I had cervical cancer after the birth of my first child when I had my first check up which came back with an abnormal pap. Could you feel or see the tumor/mass, or was this something that had to be detected with a scan, etc.? What made you want to go seek an opinion? No. The only way to detect cervical cancer is through Pap smears, pelvic exams, or HPV testing, which every young woman should have done when she begins seeing a gynecologist or becomes sexually active. What generally are the causes of this type of cancer (what exposure risks, lifestyle choices, etc.)? Some of the most common causes of cervical cancer in 90% of the cases are multiple sexual partners, other STI’s, weak immune system, birth control, and smoking. Also, DES exposed daughters have been linked to clear cell adenocarcinoma and developed cervical cancer in their late teens and early 20’s. Were you shocked that you had this type of cancer? Yes. I was just 20 years old and just had my first child when I found out. It was fast growing. They removed part of my cervix and it came back after the birth of my second child when I was 23. it was then decided I had to have a hysterectomy if I wanted to see my children grow up. How many people a year are diagnosed with this type of cancer? There are 14,000 women diagnosed yearly in the U.S. with the most common age group being between the age of 35-44.
Scan to see Renee's Interview
What are the side effects that you have had to experience as a result of this cancer? Having a hysterectomy and not being able to have anymore children past the age of 24. I remember feeling I was less of a woman. Is this cancer treatable and if so, how is it treated? With Breast cancer, five years is the marker - is this the same for your cancer? Yes. Cervical Cancer is one of the most treatable and preventable cancers today. The HPV vaccine, if given between the ages of 13-26, can prevent over 90% of this cancer. What type of doctors do you see for this type of cancer? Your gynecologist performs your annual pelvic exams and Pap smear, however, your pediatrician can administer the HPV vaccine beginning at the age of 13. When you were diagnosed, did you feel like you needed a support network, and were resources offered to you for support? Unfortunately, I was diagnosed and treated in the early 1990’s when I was just 23 years old. I did whatever my doctor told me to do. No support was offered to me, and we really didn’t have the resources available back then like we have today. How did You Night help you find support and why is support necessary? I became involved with You Night when I was diagnosed with Breast Cancer and underwent a double mastectomy in 2018. You Night has been a Godsend for me. I have found the support, love and sisterhood I needed to carry me forward through life AFTER cancer! You Night has helped me embrace who I am, scars and all. It has been such a wonderful support for me, that I know volunteer my time to help new You Night Sisters who join this amazing empowerment program.
"My advice to others is to be your own patient advocate. Educate yourself with what you can do to decrease your risk of cancer through your lifestyle and foods you eat. Get involved with support groups or empowerment programs. Knowledge is Power!"
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What is Cervical Cancer? Cervical cancer used to be the leading cause of cancer death for women in the United States. However, in the past 40 years, the number of cases of cervical cancer and the number of deaths from cervical cancer have decreased significantly. This decline largely is the result of many women getting regular Pap tests, which can find cervical precancer before it turns into cancer. Cervical cancer is a cancer arising from the cervix. It is due to the abnormal growth of cells that have the ability to invade or spread to other parts of the body. Early on, typically no symptoms are seen. Later symptoms may include abnormal vaginal bleeding, pelvic pain or pain during sexual intercourse. While bleeding after sex may not be serious, it may also indicate the presence of cervical cancer. (Source: Center for Disease Control)
Any of these symptoms should be reported to your doctor. If these symptoms appear, it is important to talk with your doctor about them even if they appear to be symptoms of other, less serious conditions. The earlier precancerous cells or cancer in the cervix is found and treated, the better the chance that the cancer can be prevented or cured.
Signs & Symptoms Blood spots or light bleeding between or following periods Menstrual bleeding that is longer and heavier than usual Bleeding after intercourse, douching, or a pelvic examination Increased vaginal discharge Pain during sexual intercourse Bleeding after menopause Unexplained, persistent pelvic and/or back pain
Prevent Cervical Cancer by being pro-active Screening tests can find abnormal cells that can be treated before they turn into cancer. Pap Test: The most common screening test to detect cervical cancer or precancerous cells (dysplasia) is the Pap test. During a Pap test, the doctor takes a sample of cells from the surface of the cervix inside the vagina, and then sends the sample to be reviewed by pathologists. Have your first Pap test when you are 21 years old from your Gynecologist. HPV Test: The human papillomavirus (HPV) looks for the virus that causes cell changes
Risk Factors Multiple Sexual Partners Early sexual activity at a young age
Smoking Exposure to miscarriage prevention drug
Other sexually transmitted infections
The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
Cervical Cancer Resources for Support
https://www.nccc-online.org/
Physician Specialist
Mission: To help women, family members and caregivers battle the personal issues related to cervical cancer and HPV and to advocate for cervical health in all women by promoting prevention through education about early vaccination and regular screening. NCCC Services: Support services for NCCC local chapters whose mission is to educate their community about HPV and cervical health issues. Free materials that educate about HPV and cervical health, including cervical cancer. Tools for prevention, detection and screening awareness.
Gynecologic oncology is a specialized field of medicine that focuses on cancers of the female reproductive system, including ovarian cancer, uterine cancer, vaginal cancer, cervical cancer, and vulvar cancer. As specialists, they have extensive training in the diagnosis and treatment of these cancers.
Alumnae members find lifelong friendships: "You Night gave me a gift so much more than I could have ever thought possible. A gift that God knew I needed even when I didn’t. The program game me the bond of love and friendship with other survivors -- friendships that feel like they’ve been in place my entire life with women who love me as fiercely as I do them. Sisters who would fight for me, even if I couldn’t fight for myself. Sisters who want only amazing things for me, just as I do them. The women who I have met in You Night are my forever blessing. We’re all survivors. Even women in the midst of their cancer battle, they too are surviving. We are survivors but so much more. And those are the things they remind me of." Melissa Gossett, St. Tammany Class of 2020
Pictured: Members of the St. Tammany Class of 2020 who were professionally trained in You Night's Runway Empowerment Program by Coach Leslie Legania-Shelby (pictured in purple). You Night's Runway Empowerment program helps our participants regain their confidence and self-worth after a cancer diagnosis.
Joy Kampen Black Ribbon Ambassador representing
Melanoma and Skin Cancer Survivors
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Joy's Story
How did you first learn you had Melanoma? I had been told that I had keloid skin (a raised scar after a surgery or injury has healed) since I was eight years old after my second surgery in my young life. My scars always were raised after my surgeries. At 19 years of age in 1971, I fell asleep on a pier by the lake at 12:00 noon. I had the worst sunburn that I had ever had. In 1980, I was pregnant with my second child, and I stepped on a nail. I got a Tetanus shot and never gave it a second thought even though the skin raised (formed a keloid) since I stepped on the nail. Could you feel or see the tumor/mass, or was this something that had to be detected with a scan, etc.? What made you want to go seek an opinion In 1998, I went to a Podiatrist for a routine matter, and I decided to show him the bottom of my foot where it was still raised from 1980. He said, “Joy, that is a melanoma, and you need surgery immediately.” As you can see from the dates between 1971-1998, my melanoma was a slow-growing one. That is not the case with many melanomas. What generally are the causes of this type of cancer (what exposure risks, lifestyle choices, etc.)? The primary risk factor for melanoma is exposure to ultraviolet (UV) light, including sunlight and tanning beds, with the risk growing with the amount of exposure. Early exposure, particularly for people who had frequent sunburns as a child, also increases melanoma risks. People who are more prone to getting melanomas are people with fair skin, freckles, light hair, several moles, or who have a family history of melanomas, or a weakened immune system. Were you shocked that you had this type of cancer? The podiatrist sent me to Ochsner/Main Campus to see an oncologist, Dr. George Fuhrman. When he said the ‘C’ word, I was shocked, numb and cried because I never thought that I would get cancer especially on the bottom of my foot, which he said was very rare. It seems like I’ve heard that from several of my doctors in other medical issues I have had – great!!! I was diagnosed with Stage 1 Melanoma, which meant that I was not metastatic. I am very blessed and grateful for that! How many people a year are diagnosed with this type of cancer? What is the age range? How many women? Approximately 99,780 people are diagnosed with melanoma every year. Of that number, 57,180 are men, and 42,600 are women. Approximately 11,641 people in the United States die from melanoma each year. Nearly 1.3 million people are living with melanomas in the United States. Melanomas are the most serious type of skin cancer because they can spread to lymph nodes and different organs very rapidly. There is an 80 percent death rate in people who develop Ocular Melanoma because it lives in the bloodstream.
What are the side effects that you have had to experience as a result of this cancer? I didn’t actually have side effects like most cancer patients experience because I didn’t have chemo or radiation. However, in order to determine whether or not the cancer had gone into my lymph nodes, they had to perform sentinel node mapping which includes dyes and radioactive substances injected into the cancerous area before the surgery. They injected, without deadening the area, five needles into the cancerous area. You could hear me screaming all the way down the hall. They removed and biopsied the sentinel node, which was not cancerous. Thank GOD!! Because of where my melanoma was located, having two back-to-surgeries because the margins weren’t clear, and the wound opening up after the second surgery, I chose not to have a third surgery with a skin graft because I knew it would keloid, and I would always feel it. I chose to let it heal from the inside out, leaving the wound open for eight months and using crutches. To this day, the keloid forms a callus and at times it is still painful after 22 years, but I don't regret my decision. Is this cancer treatable and if so, how is it treated? With Breast cancer, five years is the marker - is this the same for your cancer? Melanoma is the most invasive skin cancer with the highest risk of death. It is, however, highly curable if caught early. Prevention and early treatment are critical, especially if you have fair skin, blonde or red hair and blue eyes. Melanoma is the fifth most common cancer among men and women, but before the age of 50, the rates are higher in women. Melanoma is 20 times more common in White people than in Black people. It is treatable by surgical removal, WLE (wide local excision), which is the main treatment if you catch it early, Immunotherapy, or chemo/radiation. Melanoma is most likely to return within the first five years of treatment. If you remain cancer free for ten years, it’s less likely that the melanoma will return. How did You Night help you find support and why is support necessary? By the time that I applied for You Night, I had already been diagnosed with my second cancer: breast cancer. You Night helped me to realize how much women need support from other women with similar or like cancers. Doctors take care of us from a medical standpoint, but You Night helps us with our emotions, helps us feel beautiful, helps us feel like a woman again, and allows us to form bonds with our sisters. I am so honored and blessed that Lisa McKenzie started such a wonderful, amazing organization. It has helped so many women get emotionally back on track and feel beautiful again with all of our programs such as SPARK, ScART, storycrafting, candle passes, retreats, and our amazing new event called Ribbons Rock the Runway which will feature 18 Ambassadors with 18 different cancers. Thank you, Lisa!! You are amazing at what you do for us! I believe in You Night so much that I now work as Alum Director for the past two years.
"My advice to others is to stay positive throughout your journey and not abuse your body with the damage of the sun! You may not be as lucky and blessed as I was. Cancer will never take away the love of my adoring husband, my joy of life, the love of my family and friends, my silly personality, my faith, my love for others, my peace, and my love of God!! "
What is Skin Cancer? There are 3 major types of skin cancer: 1) Melanoma 2) Squamous Cell Carcinoma 3) Basal Cell Carcinoma
Less common skin cancers include: 4) Bowen's Disease 5) Keratoacanthoma 6) Actinic Kratosis
Melanoma is the most aggressive of the three. It is diagnosed in more than 96,000 people in the United States each year, and patients generally have a good prognosis if it is detected and treated early, before it has a chance to spread to other parts of the body. Melanoma arises in skin cells known as melanocytes, which make the pigment melanin and give skin its color. These cells are found in the deepest part of the epidermis (the top layer of skin). Squamous Cell Carcinoma of the skin occurs when the flat, thin squamous cells in the middle and outer layers of your skin develop changes (mutations) in their DNA. A cell's DNA contains the instructions that tell a cell what to do. The mutations tell the squamous cells to grow out of control and to continue living when normal cells would die.
1) Melanoma
2) Squamous Cell Carcinoma (SCC)
3) Basal Cell Carcinoma (BCC)
4) Bowen's Disease (BD)
5) Keratoacanthoma
6) Actinic Kratosis (AK)
Basal Cell Carcinoma also known as basal-cell cancer, is the most common type of skin cancer. It often appears as a painless raised area of skin, which may be shiny with small blood vessels running over it. It may also present as a raised area with ulceration. Bowen's Disease also known as squamous cell carcinoma in situ is a neoplastic skin disease. It can be considered as an early stage or intraepidermal form of squamous cell carcinoma. It was named after John T. Bowen. Keratoacanthoma is a common low-grade rapidly-growing skin tumour that is believed to originate from the hair follicle and can resemble squamous cell carcinoma. The defining characteristic of a keratoacanthoma is that it is dome-shaped, symmetrical, surrounded by a smooth wall of inflamed skin, and capped with keratin scales and debris. An Actinic Kratosis (ak-TIN-ik ker-uh-TOE-sis) is a rough, scaly patch on the skin that develops from years of sun exposure. It's often found on the face, lips, ears, forearms, scalp, neck or back of the hands. Also known as a solar keratosis, an actinic keratosis grows slowly and usually first appears in people over 40.
Physician specialist
Take precautions! The two main causes of skin cancer are the sun’s harmful ultraviolet (UV) rays and the use of UV tanning beds. The good news is that if skin cancer is caught early, your dermatologist can treat it with little or no scarring and high odds of eliminating it entirely.
If you find a spot on your skin that could be skin cancer, it's time to see a dermatologist. Found early, skin cancer is highly treatable. Often a dermatologist can treat an early skin cancer by removing the cancer and a bit of normal-looking skin. Given time to grow, treatment for skin cancer becomes more difficult. The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
How to find out if you have skin cancer: Skin cancer diagnosis always requires a skin biopsy. The procedure that your dermatologist uses to remove the spot is called a skin biopsy. Having a skin biopsy is essential. It's the only way to know whether you have skin cancer. There's no other way to know for sure What are the 5 warning signs of skin cancer to look for? While there are other warning signs, these five are the most common symptoms that cause people to seek a doctor's care. Moles on Your Skin. When it comes to spotting melanoma, moles are often the key From time to time, we all get rashes, but watch areas that are itchy, reddish patches. Lumps and Bumps Lesions ABCDE RULE Any Unexpected Changes for Skin Cancer and Concerning Skin Lesions
Ways to cut down the risk of skin cancer: Seek the shade, especially between 10 AM and 4 PM.
A is for Asymmetry One half of the spot is unlike the other half.
Don’t get sunburned. Avoid tanning, and never use UV tanning beds. Cover up with clothing, including a broadbrimmed hat and UV-blocking sunglasses. Use
a
broad-spectrum
(UVA/UVB)
B is for Border The spot has an irregular, scalloped, or poorly defined border.
sunscreen with an SPF of 15 or higher every day. For extended outdoor activity, use a water-resistant, broad- spectrum (UVA/UVB) sunscreen with an SPF of 30 or higher. Apply
1
ounce
(2
tablespoons)
of
sunscreen to your entire body 30 minutes before going outside. Reapply every two hours or after swimming or excessive sweating. Find sunscreen by searching our Recommended Products. Keep newborns out of the sun. Use
C is for Color The spot has varying colors from one area to the next, such as shades of tan, brown, or black, or areas of white, red, or blue.
D is for Diameter While melanomas are usually greater than 6 millimeters, or about the size of a pencil eraser, when diagnosed they can be smaller.
sunscreen on babies over the age of six months. Examine your skin head-to-toe every month. See a dermatologist at least once a year
E is for Evolving The spot looks different from the rest or is changing in size, shape or color.
for a professional skin exam.
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The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
Melanoma Research Foundation Patient Resources The MRF is committed to providing the most up-to-date education and support resources for melanoma patients and their loved ones.
Patient Forum
Ask a Nurse
Financial Assistance
www.melanoma.org Martha E. Stewart, MD, LLC 4060 Lonesome Rd. Mandeville, LA 70448 (985) 727-7701. www.drmarthastewart.com COSMETIC DERMATOLOGY THE ANNEX Oncology Spa Services Botox, Xeomin, Jeuveau & Facials Dysport LED Light Therapy Fillers/Injectables Hydrafacials Chemical Peels Pore Extractions Skin Microdermabrasion Tightening/Resurfacing PRP (Platelet-Rich Plasma) MEDICAL DERMATOLOGY IPL Photorejuvenation Acne IPL Hair Removal Eczema ADVATx Moles & Birthmarks Leg Veins/Sclerotherapy Psoriasis Skin Boosting with Rashes Hydraneedle Rosacea Airgent/Needle-Free Jet Skin Cancer Warts Injector
Martha E. Stewart, MD and Olivia Gioe, MD Board Certified Dermatologists
Amy Bairnsfather Royal Blue Ribbon Ambassador representing
Colorectal Cancer Survivors
082 RIBBONS 2022
Amy's Story In June of 2017, I was experiencing a strange pulling sensation in my abdominal muscles. I saw my gynecologist, and she ruled out female issues. Lying in bed one night, I felt something odd on the left side of my abdomen, which was not on the right, so I immediately scheduled a doctor’s appointment. After an exam, ultrasound, CT, and ER visit with no definitive answers from any of those, my surgeon ordered a needle biopsy. The biopsy revealed it was malignant, but the source was still unknown. When did you first learn you had this type of cancer? I first learned I had colon cancer when a colonoscopy was done in July of 2017. The mass was so large that the doctor did not risk attempting to pass the scope beyond the mass, and he wondered how my stools were passing it. What are the risk factors? The risk factors for colorectal cancer are family history, being over 50, having other medical conditions, drinking alcohol, using tobacco, not exercising, being overweight, and a poor diet. None of those were me! Were you in shock when you learned you had this type of cancer? I was absolutely shocked I had this type of cancer. I had no bowel problems. I was very ‘regular’. I even purchased a book in 2012 that described how to eat healthy to decrease the risk of cancer and other diseases. I made recipes and drank green smoothies from it regularly. How many people a year are diagnosed with this type of cancer? What is the age range? How many women? Colorectal cancer is diagnosed in 150,000 Americans per year, the majority over age 50, and 46 percent are women.
What are the side effects that you have had to experience as a result of this cancer? I experienced miserable side effects while receiving chemotherapy for four years, which was mostly cramping, diarrhea, and hand/foot syndrome. Since 70% of my colon was removed, I will likely have abnormal bowel movements for the rest of my life. Is this cancer treatable and if so, how is it treated? With Breast cancer, five years is the marker - is this the same for your cancer? I am living proof that this cancer can be treatable! In my case, the colon cancer was treated with surgery, chemotherapy, and immunotherapy. Rectal cancers may also be treated with radiation. Five years is the milestone to reach in colorectal cancer, and I just celebrated mine! What type of specialist do you see for this type of cancer? Colorectal cancer survivors typically see gastroenterologists, surgeons, and oncologists. I also requested to see a nutritionist. What type of support resources were available to you? When I was diagnosed, my family and friends were my support network. They were wonderful. Other resources were not offered to me, but I didn’t think I needed other support. How did You Night help you in your journey? I came across You Night when a nurse friend posted pictures on Facebook. When I attended my first pillar group, I realized I needed support from people who could relate because they had been through it too, and they truly understood. Participating in the class of 2020 made me realize my worth, my strength, and my faith.
Scan to see Amy's Interview
My advice to the general public is to avoid the risk factors, listen to your body, and have regular colonoscopies. My advice to other survivors is to maintain a positive attitude, don’t be afraid to ask for help, and trust in God.
What is Colorectal Cancer? Colorectal cancer is a cancer of the colon or rectum, located at the digestive tract's lower end. Early cases can begin as noncancerous polyps. These often have no symptoms but can be detected by screening. For this reason, doctors recommend screenings for those at high risk or over the age of 50. Colorectal cancer symptoms depend on the size and location of the cancer. Some commonly experienced symptoms include changes in bowel habits, changes in stool consistency, blood in the stool, and abdominal discomfort. (Image Source: Center for Digestive Disease)
Signs & Symptoms that you should pay attention to: Like all cancers, early detection is key. If you have any signs or symptoms that are of concern, please make an appointment with your family practitioner right away.
Physician Specialists
Doctors who specialize in this cancer: Gastroenterologists who treat disorders of the gastrointestinal (GI or digestive) tract Surgical Oncologists who uses surgery to treat cancer; Colorectal surgeon who uses surgery to treat diseases of the colon and rectum.
Methods of detecting colorectal cancer
How is colorectal cancer treated?
Colonoscopy is the best procedure to check for colorectal polyps and cancer. Colonoscopy is an outpatient procedure in which a physician uses a long, flexible scope (called a colonoscope) to view the rectum and entire colon. During the procedure, polyps can be removed and tested for signs of cancer
Treatment for colon cancer usually involves surgery to remove the cancer. Other treatments, such as radiation therapy and chemotherapy, might also be recommended
Healthy Choices Some studies suggest that people may reduce their risk of developing colorectal cancer by increasing physical activity, keeping a healthy weight, limiting alcohol consumption, and avoiding tobacco The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
CT Colongraphy is an excellent alternative in colorectal cancer screening Capital Imaging Services (dba Diagnostic Imaging Services) celebrates the sisters of You Night and life beyond a cancer diagnosis. Reach out and we'll be there to serve our communities in the fight against colon cancer. What is CT Colonography? CT (Computed Tomography)Colonography, also known as Virtual CT Colonography or Colonoscopy, is an advanced method of analyzing the bowel in a non-invasive way which is safer and is more comfortable for people. This method does not require you to be sedated or undergo anesthesia A Computerized Tomography (CT) scanner is used to produce two and three dimensional images of the entire large bowel, which usually include a virtual “fly-through” or map of the entire colon
Colon cancer is common, affecting about 1 in 20 people. Computed Tomography (CT) Colonography is a minimally invasive exam to screen for cancer of the large intestine, also known as colon cancer. Offering Saturday morning appointments for further convenience Advanced diagnostic studies include specialty breast biopsy and hysterosalpingograms Wonderful care from our technologists - gentle, calm and reassuring Save money when having exams not fully covered by insurance and subject to a deductible
Doctor trusted. Patient preferred. (P) 504-883-5999 (P) 985-641-2390
Metairie
Marrero
Slidell
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www.capitolimagingservices.com
Resources for Support
You Night brought the ScART program to FIGHTCRC's Colorectal Cancer Ambassador retreat in September, 2022. "We are proud to work alongside Lisa and the ScART team to bring healing and empowerment to our ambassador retreat. Many colorectal cancer survivors are hesitant to show off their scars, but ScART will allow them to see the strength of their mind and bodies." - Natalie Keiser, Fight CRC Program Coordinator and Admin Support
Host a ScART event: www.scartevents.com
Karen Ziebarth Orange Ribbon Ambassador representing
Leukemia / Blood Cancer Survivors
090 RIBBONS 2022
Karen's Story
How did you first learn you had leukemia? I first learned that I had leukemia when I “woke up” in Intensive Care Unit at North Oaks Medical Center back in October 2009. Looking around the room with all the pumps and equipment being used, I could not figure why blood was hanging. Why did I need blood? Why was I even in the hospital? Why was my family looking so worried? I was told “You have leukemia”. My family knew that I had leukemia before I knew. There are several different kinds of leukemia. I was diagnosed with Acute Promyelocytic Leukemia (APL). Could you feel or see the tumor/mass, or was this something that had to be detected with a scan, etc.? What made you want to go seek an opinion? I did not have a mass or tumor because leukemia is a blood cancer. It cannot be detected with a scan only through blood work. I decided to go to the emergency room because I had a very bad headache. A headache that was excruciatingly painful. At this time, I did not know that I was having uncontrolled bleeding in my brain. What generally are the causes of this type of cancer (what exposure risks, lifestyle choices, etc.)? There are no exact causes of leukemia. Some things that may lead to leukemia are: genetics, exposure to benzene, and tobacco use. This form of leukemia is the result of chromosomes 15;17 translocating. Part of 15 will be on 17 and part of 17 on 15. Were you shocked that you had this type of cancer? Oh yes, I was shocked that I had cancer!!!!! Nobody wants to even consider that they could be diagnosed with cancer. How many persons a year are diagnosed with this type of cancer? About 600 to 800 people a year are diagnosed with acute promyelocytic leukemia around the age 40 with men and women equally diagnosed.
What are the side effects that you have had to experience as a result of this cancer? The cancer changed me in so many different ways, not only physically, but emotionally, and mentally as well. Chemo-brain for starts is no joke. Since the leukemia was not detected early, I had severe complications: DIC disseminated intravascular coagulation (death is coming), bruises appearing all over my body, unable to talk or move the right side of my body, and seizures. I actually was diagnosed with Catastrophic Acute Promyelocytic Leukemia. This is when I had my “near death” experience which was the best part of this cancer journey. Is this cancer treatable and if so, how is it treated? With Breast cancer, five years is the marker - is this the same for your cancer? APL is the most curable leukemia if detected early. In my case, it was not detected early. As a busy mom of three kids and working night shifts, I overlooked some of my symptoms. Treatment includes chemotherapy, ATRA {all-trans-retinoic acid] and ATO [arsenic], but there are new advancements in treatments every day. I was on treatment for two and a half years. I am in remission, but I will be at risk for relapse for the rest of my life. I still go for blood work once a year. What type of doctors do you see for this type of cancer? For this type of cancer, you would see a Hematologist - a specialist that treats blood cancer. Dr David Oubre ran to ICU after seeing the blood test results. I was blessed with the best doctors including Dr Greg Allen, my general practitioner. When you were diagnosed, did you feel like you needed a support network, and were resources offered to you for support? When I was diagnosed, I stayed in the ICU for weeks. After I got discharged, I could not be around any support group due to my low immune system. No support resources were offered to me until several years after treatment. How did You Night help you find support and why is support necessary? You Night helped me find a sisterhood of love and support. Support is so necessary because having cancer and going through treatment is very hard physically, mentally, and emotionally.
Scan to see Karen's Interview
"My advice to others is to keep your focus on God and stay positive! Know that some days are harder than others, but we can be there for each other in prayer and love. For a long time, I would say “when I got sick”. I struggled with accepting and saying the “C” cancer word. My advice is to accept your diagnoses and keep moving forward even if it is day by day, hour by hour, or minute by minute."
Patient Support Financial Support Food and Nutrition' LLS Podcast Support Groups Caregiver Support
www.lls.org
What are Leukemia & Blood Cancers? Leukemia, a type of cancer found in your blood and bone marrow, is caused by the rapid production of abnormal white blood cells. The high number of abnormal white blood cells are not able to fight infection, and they impair the ability of the bone marrow to produce red blood cells and platelets. Many types exist such as acute lymphoblastic leukemia, acute myeloid leukemia, and chronic lymphocytic leukemia. Many patients with slowgrowing types of leukemias don't have symptoms. (Image Credit: Kateryna_Kon / stock.adobe.com)
Drenching sweats, especially during the nighttime
Swollen glands (lymph nodes) or enlarged spleen
Fevers Fatigue
Unexplained and unintended weight loss Anemia, easy bruising and bleeding
Prevention of blood cancers Avoid exposure to radiation, chemicals such as pesticides or benzene, and to smoking or tobacco in any form. Additional lifestyle behaviors, such as staying active and eating a healthy diet can help reduce your risk for developing a variety of cancers and other diseases.
Compromised immune system, which can make patients prone to infection, shingles and fever blisters
Signs & Symptoms of Blood Cancer For some patients, symptoms can appear suddenly and require immediate evaluation and intervention. For other patients, symptoms can be subtle and develop over several years.
Methods of detecting blood cancer. Leukemia: Your doctor will obtain a complete blood count (CBC) test, which can identify abnormal levels of white blood cells relative to red blood cells and platelets. A complete blood count (CBC) measures the amount of each type of blood cell in a sample of your blood. Blood cancers may be found using this test. A test that looks at the blood proteins.
How does someone get blood cancer? Blood cancer is caused by changes (mutations) in the DNA within blood cells. This causes the blood cells to start behaving abnormally. In almost all cases, these changes are linked to things we can't control. They happen during a person's lifetime, so they are not genetic faults you can pass on.
The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
Kristen Monroe
Yellow Ribbon Ambassador representing
Osteosarcoma Bone Cancer Survivors
094 RIBBONS 2022
Kristen's Story How did I learn I had osteosarcoma? I started having slight pains in my right elbow, some unusual tingling from my elbow down and eventually numbness in my fingers. My mother first took me to a general practitioner who said I had tennis elbow, which I knew was not correct. A few months later, my mother spoke to a bone specialist, and he told her to bring me in to see him. X-Rays were taken and he immediately said it was a tumor. The following days were a blur, and we were sent to Birmingham, Alabama to have a biopsy. My biopsy came back as a Malignant tumor ... Stage Two Osteosarcoma. Could you feel or see the tumor/mass, or was this something that had to be detected with a scan, etc.? What made you want to go seek an opinion? No, I could not feel the tumor. What I later learned was that the tumor was growing and caused a hairline fracture in my bone. What generally are the causes of this type of cancer (what exposure risks, lifestyle choices, etc.)? All I know about the causes of this type of cancer is that it is sometimes caused because of a genetic mutation which I do not have. It’s possible that my tumor suppressor gene was not working properly. Were you shocked that you had this type of cancer? I was absolutely shocked to find out I had cancer and especially being so young! I considered myself a normal teenage girl in high school, and then BAM I’m facing life or death situations and surgeries. How many people a year are diagnosed with this type of cancer? There are about 1,000 new cases a year mostly occurring in children, teens and young adults between the ages of 10 and 30 with osteosarcoma. About 2% of childhood cancers are osteosarcoma, but they make up a much smaller percentage of adult cancers.
What are the side effects that you have had to experience as a result of this cancer? My side effects included limited range of motion in my right arm. I am lucky and grateful I even have an arm! My other side effects were mostly from chemotherapy which was administered intravenously in four massive doses of Adriamycin and Cisplatin, aka the red devil. Hair loss, weight loss, vomiting, nausea, extreme fatigue, and the worst being the mouth ulcers that some chemotherapy causes. Is this cancer treatable and if so, how is it treated? With Breast cancer, five years is the marker - is this the same for your cancer? Osteosarcoma is treated with surgery, chemotherapy, and/or radiation. And, yes, at the five year marker, I was considered cancer free! What type of doctors do you see for this type of cancer? My doctors included an orthopedic surgeon and a hematology oncology doctor. When you were diagnosed, did you feel like you needed a support network, and were resources offered to you for support? When I was diagnosed in 1992, I had my family and friends who were my main support group. My doctors were amazing and so were my nurses. There was no such thing as Facebook back then or, to my knowledge, any type of support group. How did You Night help you find support and why is support necessary? I always knew of You Night! I actually went to the very first show and loved it. I knew Lisa McKenzie and ran into her after my battle with breast cancer. I decided to sign up to walk the runway in 2017. I am extremely glad that I did! I have met so many wonderful women through the organization who will remain lifelong friends. I had no idea I would gain so much from being involved in this support group. Scan to see Kirsten's Interview
"My advice to others is to know your body. Be in tune with yourself - you will know when something is not right. I found both of my cancers on my own. "
What is Bone Cancer? Bone cancer is a mass of unusual cells growing in a bone. Most bone tumors aren't cancerous. Causes of bone tumors include abnormal healing of an injury, inherited conditions, radiation therapy. It can also be caused by bone cancer or another cancer that has spread to the bone from other parts of the body. A bone tumor may cause a painless mass. Some people have dull, aching pain. And in some cases, minor injury causes a fracture near the tumor. Treatments include surgery and radiation. Some noncancerous tumors go away without treatment.
Physician Specialist
Physical Exam
Bone cancer is often treated by a team of specialists that may include: Orthopedic Surgeons who specialize in operating on cancers that affect the bones (Orthopedic Oncologists) Doctors who specialize in treating cancer with chemotherapy or other systemic medications (Oncologists)
Methods of detecting bone cancer Biopsy
The most definitive way of diagnosing bone cancer is to take a sample of affected bone and send it to a laboratory for testing. This is known as a biopsy. A biopsy can determine exactly what type of bone cancer you have and what grade it is.
How is bone cancer treated? X-ray Bone Scan
CT, MRI & Pet Scan
Treatments include surgery and radiation. Some noncancerous tumors go away without treatment. Sometimes treatment requires surgery to remove the section of cancerous bone – it's often possible to reconstruct or replace the bone that's been removed, although amputation is occasionally necessary. chemotherapy – treatment with powerful cancer-killing medicine. radiotherapy – where radiation is used to destroy cancerous cells.
How to prevent bone cancer Other than exposure to radiation (usually during radiation therapy), there are no known lifestyle-related or environmental causes of bone cancer, so at this time there is no way to protect against most of these cancers.
The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
Pamela Kroeper
Burgundy & Ivory Ribbon Ambassador representing
Head & Neck Cancer Survivors
098 RIBBONS 2022
Pam's Story
How did you first learn you had Base of the Tongue Cancer? Could you feel or see the Tumor/Mass, or was this something that had to be detected with a scan, etc.? What made you want to go seek an opinion? I felt and noticed a lump on each side of my neck. There were no other signs or symptoms. I was concerned, and brought it to the attention of my Obstetrics and Gynecology Doctor (OB/GYN) during my routine yearly exam. After examining my neck, my OB/GYN ordered a CT Scan with contrast of my neck. The results of the CT Scan prompted her to refer me to an Otolaryngologist (Ear, Nose & Throat Doctor/ENT). After the completion of a very thorough office exam, by my ENT, he looked at me and said, "You have “Base of the Tongue Cancer!" This diagnosis was later confirmed from a biopsy. I was then referred to an oncology team of doctors … and my journey began!
TMJ (jaw stiffness/pain and not able to open my mouth wide), loss of my Thyroid (Hypothyroid), and loss of my Uvula. I was placed on a feeding tube to obtain nourishment and lost my ability to speak for approximately a year. Many of these symptoms continue to be an ongoing challenge for me.
What generally are the causes of this type of cancer? The two most common causes of Squamous Cell Carcinoma of the Base of the Tongue are: (1) Alcohol and Tobacco Use (most common), and (2) Human Papillomavirus (HPV-16). My diagnosis of the Base of the Tongue Cancer was caused by the Human Papillomavirus (HPV Positive). Due to the shame and embarrassment of the stigma of cancers associated with the Human Papillomavirus, I was advised by several of my closest family and friends not to speak of this devastating virus. With a restored voice, by the Grace of God, I now have the courage to help bring awareness of Head and Neck Cancer, as well as cancers associated with the Human Papillomavirus. HPV is a very serious virus that causes six types of cancer … we should never be ashamed or embarrassed of illness.
What type of doctors do you see for this type of cancer? I have an incredible multidisciplinary team of doctors lead by my Hematology Oncologist that includes, but is not limited to my: Radiation Oncologist, Otolaryngologist (Ear, Nose & Throat Doctor/ENT), Surgeon, and Obstetrics and Gynecology Doctor (OB/GYN). Additional members of my team consist of my Dentist, Orthodontist, Dietitian, Speech Therapist (Dysphasia), Occupational Therapist, and Physical Therapist.
Were you shocked that you had this type of cancer? I was extremely shocked and surprised to hear about my diagnosis of Squamous Cell Carcinoma of the Base of the Tongue with Bilateral Cervical Lymphadenopathy (HPV Positive). I was completely unfamiliar with Base of the Tongue Cancer, as well as with the Human Papillomavirus. What are cancers of the Head and Neck? There are five main types of Head and Neck Cancer, each named according to the part of the body where they develop: (1) Laryngeal and Hypopharyngeal Cancer (larynx/voice box); (2) Nasal Cavity and Paranasal Sinus Cancer; (3) Nasopharyngeal Cancer; (4) Oral and Oropharyngeal Cancer (mouth/tongue); and (5) Salivary Gland Cancer. How many persons a year are diagnosed with this type of cancer? Researchers estimate that more than 68, 000 men and women in the U.S. will be diagnosed with Head and Neck Cancer this year. Head and Neck Cancers account for nearly 4% of all cancers in the U.S. Cancers of the Head and Neck are more than twice as common among men as they are among women. Women only account for 3% of individuals diagnosed with Head and Neck Cancers. Head and Neck Cancers are diagnosed more often among people over age 50 than they are among younger people. However, this is changing due to an increase in the diagnosis of the Human Papillomavirus. What are the side effects that you have had to experience as a result of this cancer? Some of the brutal residual side effects that I have experienced from the treatments of Radiation and Chemotherapy include but are not limited to: difficulty eating, swallowing and speaking, face and neck swelling, burning, redness, irritation and sores in the mouth, dry mouth and thickened saliva, changes in taste/loss of taste, neck tightness due to scar tissue, skin changes; patchy loss of hair, nausea; decreased appetite, earaches,
Is this cancer treatable and if so, how is it treated? With Breast Cancer, five years is the marker…is this the same for your cancer? Head and Neck Cancer treatments include, but are not limited to: surgery, radiation therapy, chemotherapy, targeted therapy, immunotherapy, and/or a combination of treatments. My treatments consisted of a combination of chemotherapy and radiation therapy. Head and Neck Cancer yearly markers vary and are ongoing from 5 years, 10 years, 15 years, and 20 years.
When you were diagnosed, did you feel like you needed a support network and were resources offered to you for support? At the time of my diagnosis, I did not feel the need for a support network. I am a woman of faith and felt that my faith, family and friends, along with my medical team, were all the support that I needed!!! I hadn’t really thought beyond that. At the time of my cancer diagnosis, there were no resources offered to me for support. However, through my personal research, I found two resources that I consider invaluable and contain a plethora of information. They are listed as follows: https://headandneck.org and https://hpvalliance.org How did “You Night” help you find support and why is support necessary? The gift of You Night was the “greatest gift” that I received during this journey! It provided an emotional support that I didn’t know that I needed. As a wife, a mother, a daughter, a sister and a friend diagnosed with cancer, I wanted to protect my loved ones from any additional concern, pain and worry that they were experiencing out of love for me…so I hid what I was experiencing emotionally from them…holding all of those feelings deep inside. When I met he sisters of You Night and engaged in several of the programs such as the Story Crafting Program and the SCART Program…it taught me to look inward, something that I hadn’t really thought about…and it pulled emotional feelings that I held inside and was never able to share with anyone … and brought all that out in a beautiful and healing way. Then, there is the Sisterhood … what a blessing it is to have these courageous and inspiring women, diagnosed with many different types of cancers to share this journey with. There is a beautiful gift of unspoken words among us … we look at each other … we reach out and hold each other’s hand … and we just know … nothing else needs to be said.
Scan to see Pam's Interview
"I think that the best advice that I can share with anyone diagnosed with Head and Neck Cancer or any type of cancer … is to remember, that cancer is sooo very limited ... … it can’t take your faith, it can’t take your hope, it can’t take your love, your joy, your courage, your spirit … it can’t take your memories; it can’t take your family and your friends … it can’t take your voice and all of your blessings and sooo much more! So hold on to the things that you CAN do…and all of the "joy" that it brings!
Pictured: Pam and Mandeville Boutique Owner Tammy St. Philip, of J Ashley Design Studio, who designed Pam's beautiful gown and accessories in the colors of ivory and burgundy, representing the awareness ribbon for Head and Neck Cancer. Tammy has lovingly styled dozens of You Night sisters for the organization's runway empowerment program. Get inspired and visit J Ashley Design Studio at www.jashleyshowroom.com
What are Head and Neck Cancers? There are 5 main types of head and neck cancer, each named according to the part of the body where they develop: Laryngeal and hypopharyngeal cancer. The larynx is commonly called the voice box. This tube-shaped organ in the neck is important for breathing, talking, and swallowing. It is located at the top of the windpipe, or trachea Nasal cavity and paranasal sinus cancer. The nasal cavity is the space just behind the nose where air passes on its way to the throat. The paranasal sinuses are the air-filled areas that surround the nasal cavity. Nasopharyngeal cancer. The nasopharynx is the air passageway at the upper part of the throat behind the nose. Oral and oropharyngeal cancer. The oral cavity includes the mouth and tongue. The oropharynx includes the middle of the throat, from the tonsils to the tip of the voice box. Salivary gland cancer. The salivary gland produces saliva. Saliva is the fluid that is released into the mouth to keep it moist and that contains enzymes that begin breaking down food.
Signs & Symptoms
Foul Breath
Weakened Immune System
Nose bleeds
Sore Throat
Difficulty Swallowing
Jaw Pain
White Patch on Tongue
What type of doctor treats head and neck cancer? An otolaryngologist, also called an ear, nose and throat (ENT) doctor, specializes in the care and treatment of the area below the brain and above the lungs (except for the eyes).
Methods of detecting head and neck cancer Swelling or a sore that does not heal; this is the most common symptom Red or white patch in the mouth Lump, bump, or mass in the head or neck area, with or without pain Persistent sore throat Foul mouth odor not explained by hygiene Hoarseness or change in voice Nasal obstruction or persistent nasal congestion Frequent nose bleeds and/or unusual nasal discharge Difficulty breathing
Support
Double vision Numbness or weakness of a body part in the head and neck region Pain or difficulty chewing, swallowing, or moving the jaw or tongue Jaw pain Blood in the saliva or phlegm, which is mucus discharged into the mouth from respiratory passages Loosening of teeth Dentures that no longer fit Unexplained weight loss Fatigue Ear pain or infection
Screenings and Awareness Programs Gas Card Programs Peer to Peer Programs
www.headandneck.org
The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
UNDERSTANDING H U M A N P A P I L L O M A V I R U S ( H P V )
Almost all cervical cancer is caused by HPV. Some cancers of the vulva, vagina, penis, anus, and oropharynx (back of the throat, including the base of the tongue and tonsils) are also caused by HPV. Research is still being done to understand how and to what extent HPV causes these cancers.
Cancers Associated with Human Papillomavirus (HPV): Vulva Vagina Penis Anus Oropharynx (back of throat) Base of Tongue Tonsils
102 RIBBONS 2022
Lillian Krepper and Marcia Cross cofounded the HPV Cancers Alliance to educate, save lives and dispel the stigma.
"No one ever told me my HPV diagnosis could lead to anal cancer. Now I'm on a mission to educate people, save lives and dispel the stigma around this increasingly common disease." - Lillian Kreppel As told to Diana Whitney, Healthy Women www.healthywomen.org February 2020 At first, I thought it was a hemorrhoid. I experienced a lot of itching and found blood in the toilet consistently for a few months. "This is not normal," I thought. So I went to see my gynecologist, who had actually informed me years ago that I had HPV. She did a vaginal exam and said, "Everything's fine." Then she did a digital rectal exam, and I kind of jumped. "Wow, that really bothered me," I told her. "Well, the anus and the vagina are close together," she replied. She reassured me that I was fine, but I knew that something was wrong. I could feel this thing I thought was a hemorrhoid getting angrier. I remember sitting in Pilates class with my legs straight out in front of me — it felt like I was sitting on something. The next day I went to my gastroenterologist. I'd had a gastro doctor since I was 40, because my grandmother had colon cancer and I'd been getting colonoscopies. I told him what I was experiencing, and he said, "OK, we're going to do the most embarassing test ever right now." Then he did an anoscopy, where he inserted this tube with a light into my anus to view the tissues. When he was done, he didn't look at me. "We need to do a sigmoidoscopy tomorrow," he said. "What's that?" I asked. I really trust this doctor. He explained, "It's like a colonoscopy, but it looks at the anal canal." After we did that procedure, he told me I had a malignant tumor. The good news was that it was treatable. So I looked at my watch and said, "All right, let's do this." We followed up with a CAT scan, an MRI, PET scans, many different tests. I learned it was Stage 2 cancer. I never cried or got upset about my diagnosis, although I was in shock. I knew I had to move forward and focus on getting rid of the tumor. I treated it like something I needed to remove, almost like a wart. I tacked a sheet on my bulletin board charting the days of radiation that I had to get through. It was a standard 28day treatment, plus oral chemo. Every day when I came home from the hospital, I would cross off a day. At Sloan Kettering, I always had my friends with me. I'm not married, but I have a strong group of friends. They kept me company, supported me and asked any questions that I missed. The providers ended up calling us the Real Housewives of Sloan Kettering! The first time my oncologist walked into the room, I thought, "Oh my god, is this my doctor?" He looked like he was 12 years old. But he was so good and always listened to my questions. I'll never forget when I was getting fitted for my custom cast — which keeps you in the exact same place every day for radiation — he came over and rubbed my shoulder, asking, "Are you OK?" That gesture meant everything. My doctor warned me that the treatment wouldn't be a walk in the park. At the beginning I wouldn't feel anything, he said, but toward the end it would get rough. I was OK for the first three weeks — I would walk across town to the cancer center. Then it started to get worse. I was in a lot of pain and had extreme burning when going to the bathroom. I lost my appetite. I stopped walking to the hospital and Lillian Kreppel is a Cancer Thriver, Public Speaker, Entrepreneur, and Changemaker. After her anal cancer diagnosis in 2017, she created the HPV Alliance Organization and became a passionate advocate for the prevention and treatment of all HPV-related cancers. She is on a mission to change the negative stigma around whispering the words "HPV" and "anal cancer." https://hpvalliance.org
needed a special "doughnut" to be comfortable sitting down. Luckily I was using vaginal dilators, which were a new therapeutic technique to protect my lady parts during radiation. I've since spoken to anal cancer patients who didn't use dilators, and they unfortunately struggle with pain during sexual intercourse. I stayed very positive throughout my whole treatment. I told myself, "When I'm done with this, I'm having a big party." I threw that party in April of 2018, at my friend's restaurant-bar in Manhattan. I invited my oncologist, my gastro doctor and their nurses, and I had custom plaques made for all of them. Justine Almada, my good friend and executive director of the Anal Cancer Foundation, came and spoke because I wanted to have an educational piece. It was a very fun night. We had toilet paper centerpieces, an ass pinata, goody bags with hemorrhoid cream and a big cake in the shape of an ass. It was hysterical! My comedian friend, who's very dirty, performed a set. We played '70s and '80s music, and to my surprise, the doctors were the last to leave. Then I started volunteering with the Anal Cancer Foundation. The more I talked to people, the more I heard the same story: My doctor thought it was hemorrhoids. My doctor told me to go home and put some cream on it. It wasn't even on their radar. No one was talking about the HPV connection. I heard from other patients that their gynecologists had missed it, too. One woman had seen a poster in her doctor's office listing all the types of women's cancers, and HPV wasn't even mentioned. In fact, there are seven cancers linked to HPV, and five of them affect women: cervical, vulvar, vaginal, oral and anal. I kept doing research, and I saw a post from actress Marcia Cross, revealing that she'd had anal cancer linked to HPV. I immediately got in touch with her through a friend, and Marcia was amazing from the moment we spoke on the phone. Now we've been traveling around the country together for over a year, speaking at conferences and summits about what we've been through in an effort to save lives. We've formed a strong bond — there is no one else I would want to do this important work with. I am so honored to call her my dear friend. I realized how much we needed to raise awareness about this common disease, so I created the HPV Alliance, a nonprofit organization dedicated to filling in gaps in consumer and provider information. There's so much misinformation out there about HPV, even though it's one of the most pervasive viruses in the world. When a woman has an abnormal pap smear, it usually means she has HPV, according to Dr. Stephanie V. Blank, a gynecological oncologist on my board at the HPV Alliance. I believe women should always ask about their diagnosis, because often doctors don't state it. I've learned you can have HPV even if you've only had one partner. You can get it through open mouth kissing, because it's a virus and not necessarily transmitted through sexual contact. I'm dedicated to spreading knowledge and saving lives through education, HPV prevention, and detection of the seven cancers. People feel ashamed to talk about anal cancer. They're squeamish about that part of the body. A year ago I went with Marcia to a Farrah Fawcett Foundation event in Hollywood, and a 60-something woman came up to me. She said, "Oh, I need you to help me. I've been telling everybody it's colon cancer."
I told her, "Listen, you need to say what it is. Saying it helps people learn, relate and be vigilant about their own health." I want to destigmatize anal cancer and encourage women — and men — to take ownership of their health. It's imperative that we engage the medical community in this conversation, so that what happened to me doesn't happen to anyone else. HPV vaccines can be given starting at age 9 years. Children who start the HPV vaccine series on or after their 15th birthday need three doses, given over 6 months. If your teen isn't vaccinated yet, talk to their doctor about doing so as soon as possible. Early protection works best.
Deidra Langridge
Lime Green Ribbon Ambassador representing
Non-Hodgkin's Lymphoma Cancer Survivors
106 RIBBONS 2022
Deidra's Story
How did you first learn that you had this type of cancer? In August of 2006, while at a family function, I questioned my godson, Michael Morris, MD, whom at the time was a second year medical student, about a non painful lump in my neck. Michael was aware that my mother, his grandmother, Erline Ferguson had just completed treatment for Non Hodgkin's Lymphoma so he firmly urged me to see a doctor immediately. He made me promise him to do so. I honored my promise to Michael and began seeing an ENT. After a series of antibiotic failures to change the lump, an MRI was ordered. Could you feel or see the tumor/mass, or was this something that had to be detected with a scan, etc.? What made you want to go seek an opinion? The lump was a dark mass. You see, I had Melanoma in 1990 so there was no such thing as a good mass in my body. My husband Roy and I opted for a Lymph-nodectomy which produced the diagnosis of Non-Hodgkin’s Lymphoma. I had Dr. Occhippinit order my PET scan so that my oncologist, Jay Saux, MD, would be informed and immediately armed with all the information necessary to devise a medical plan of action. Were you shocked that you had this type of cancer? I was a pharmaceutical representative at the time and blessed to know what to do when hit with such a traumatic diagnosis. My mother had just completed six months of treatment for the same type of cancer that year - just 65 miles away. She was 74 and I was 47. There is no such thing as coincidences in my world. How many women are diagnosed with this type of cancer each year? Did you know that there are over 33,000 women diagnosed every year with NHL? It’s the sixth highest ranked cancer diagnosed in women, but never talked about, and at the time of my cancer, there was nowhere other than the American Cancer Society for support. As to why or how I got NHL at the time was very speculative. What do you think caused this cancer? Now, I truly have two trains of thought: The first one is that the years my father’s office had been abated for asbestos, I was the only child still living at home attending college. Mother washed all three of our clothes together.
Now, you cannot turn the television on without seeing commercials aimed at that exact topic. The second train of thought now is there are studies/ evidence that Melanoma is a precursor to NHL, of which I had a melanoma in 1990. What was your treatment plan? I was diagnosed as Stage 3 because the cancer was found in my lymph nodes above and below my diaphragm and on both sides of my body (bilateral) - in lay terms, from my ears to my hips in all my lymph nodes. My treatment was six rounds of some really strong, aggressive chemo followed by another two and a half years of chemo infusion every three months. I never got to forget that I had NHL or any other form of cancer for THREE YEARS!!! But It was and IS treatable. There are even newer and greater advances in treatment of this cancer today. Thank God! How did you learn about You Night? I was blessed to retire early in 2012. At the beginning of 2013, I began volunteering at Mary Bird Perkins Cancer Center. I wanted to give back to the doctors and nurses that had helped me along my cancer journey. I guess, too, I wanted to help other cancer patients with my story and, hopefully, make a difference for someone. I had no idea what a difference it would make in helping me complete my own personal journey. This is where I first heard of You Night and began to encourage patients to research the organization. Long story short, that’s when I personally became involved with You Night as a Board Member as well as a participant with seven of the patients from Mary Bird Perkins that I had recommended. I had the time of my life with the ladies of You Night for many years. This is a sisterhood that you never want the people of your life to be a part of, but so thankful that you have found it when you needed it. The old verbiage “ I know what you mean” is shared with this group of women - supported and then helped like no other that I am aware. I could wear three different ribbons tonight, but this year is very special to me, for only Lime Green represents both my mother and me. Mom will be 90 on August 31st . So, Happy Birthday Mom!! I'm celebrating the life you have lived by wearing Lime Green. For you and all the other 33,000 women diagnosed this year with NHL or other any form of cancer, I salute you. Scan to see Deidra's Interview
"My advice to others is to remember that life is a journey. If we didn’t have difficulties along the journey, we may not appreciate our blessing as greatly. Stay strong and brave. God has a plan for each of us.
What is Non-Hodgkins Lymphoma? Non-Hodgkin's lymphoma is a type of cancer that begins in your lymphatic system, which is part of the body's germ-fighting immune system. In non-Hodgkin's lymphoma, white blood cells called lymphocytes grow abnormally and can form growths (tumors) throughout the body. Non-Hodgkin's lymphoma is a general category of lymphoma. There are many subtypes that fall in this category. Diffuse large B-cell lymphoma and follicular lymphoma are among the most common subtypes. The other general category of lymphoma is Hodgkin's lymphoma. Advances in diagnosis and treatment of non-Hodgkin's lymphoma have helped improve the prognosis for people with this disease.
Signs & Symptoms
Fever
Excessive Feeling of weakness Night Sweats
Unexpected Weigh Loss
Loss of appetite
Breathlessness
Itchiness
The most common sign of lymphoma is a lump or lumps, usually in the neck, armpit or groin. These lumps are swollen lymph nodes, sometimes known as 'glands'. Usually, they're painless. Fatigue is different to normal tiredness.Swollen lymph nodes in your neck, armpits or groin. Abdominal pain or swelling. Chest pain, coughing or trouble breathing. Persistent fatigue. Fever. Night sweats. Unexplained weight loss.
How is non-Hodgkin's lymphoma treated and who is on the treatment team There are over 60 different kinds of non-Hodgkin's lymphoma, and your treatment depends on which one you have. Together, your team will find out the type and stage of your cancer. Then, they'll work closely with you to come up with a treatment plan.
Treatment Team: Hematologist, Medical oncologist, Neuro-oncologist, Radiation oncologist, Surgical oncologist, Oncology nurse.
How to prevent non-Hodgkin's lymphoma There’s no known way to prevent NHL. It may be possible to lower your risk for the condition by avoiding known risk factors such as obesity and HIV: Using barrier methods each time you engage in sexual activity can lower your chances of contracting HIV. Avoiding intravenous drug use or using clean needles when injecting drugs can lower your chances of contracting HIV or hepatitis C The following actions can help prevent obesity and may protect against lymphoma staying at a moderate weight keeping physically active. following a nutritious diet with lots of fruit, vegetables, and whole grains, and limited sugary drinks, red or processed meats, and highly processed foods The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
Rebecca Lovingood Purple Ribbon Ambassador representing
Hodgkin's Lymphoma Cancer Survivors
110 RIBBONS 2022
Rebecca's Story
How did you first learn you had Hodgkin’s Lymphoma? My final month of college in 1982, I started coming down with a number of illnesses. I was hospitalized with pneumonia and treated for it, along with tuberculosis and other issues. One thing they noticed was that I had a lymph node in my chest close to my heart that was enlarged. The doctors chose not to biopsy it at the time but to watch it. Two years later, a new location in a lymph node in my neck became enlarged. When they removed it and sent it to be analyzed, it was determined that I had Hodgkin’s Lymphoma. Could you feel or see the tumor/mass, or was this something that had to be detected with a scan, etc? What made you want to go seek an opinion? As I mentioned earlier, the tumor was originally suspected two years prior. Once it moved into my neck, then I could feel the enlarged lymph node. Since Hodgkin’s Lymphoma is cancer of the lymphatic system, it can originate anyplace in the body, but most often presents in the neck. Mine started in my chest. The reason I originally saw my doctor was because I had pericarditis and pneumonia. Only after taking an X-ray was it noticed that I had an enlarged lymph node in my chest. What generally are the causes of this type of cancer (what exposure risks, lifestyle choices, etc.)? The exact cause of Hodgkin’s disease is not known. Some preliminary research suggests that an infectious agent, such as a virus (e.g., Epstein Barr Virus) may play some role in Hodgkin’s disease. Recent studies indicate that there may be a genetic susceptibility to Hodgkin’s disease in the young adult form of the disorder. It is also felt that environmental factors or immune system deficiencies may play a role in the development of Hodgkin’s disease. Therefore, the cause may be due to multiple factors. Were you shocked that you had this type of cancer? Since I had known there was a possibility that I had cancer for two years, the diagnosis in some ways was a relief. I could finally put a name on what I had. It was a shock, and I had to do some research as to what Hodgkin’s Lymphoma was, but I finally had a name. How many persons a year are diagnosed with this type of cancer? What is the age range? How many women? In the United States, 8,540 new cases are diagnosed each year, of that 3,970 are women, a little less than half. Both children and adults can develop Hodgkin’s lymphoma, but most are between the ages of 15 – 40 or over 55 years old.
What are the side effects that you have had to experience as a result of this cancer? The only side effect was that I was coming down with every cold, sore throat or illness that was currently going around. I was diagnosed as asymptomatic. Some affected individuals may also have fever, night sweats, weight loss, and, rarely, bone pain. One of the weird side effects some people experience is when drinking an alcoholic beverage, they experience pain. Is this cancer treatable and if so, how is it treated? With Breast cancer, five years is the marker – is this the same for your cancer? Yes, this cancer is very treatable. In fact, it has a very high success rate of 88% survival for five years or longer. The treatment regimen has changed from when I initially was diagnosed. The treatment now starts out with surgery where the spleen is removed, along with a portion of the liver and some of the lymph nodes to determine what stage the lymphoma is in. After healing from the surgery, chemotherapy is the next step. Depending on how far it has advanced, radiation and stem cell transplantation are also possible. What type of doctors do you see for this type of cancer? You will see a surgeon, an oncologist and possibly a radiation oncologist depending on the treatment plan. When you were diagnosed, did you feel like you needed a support network, and were resources offered to you for support? When I was diagnosed, the idea of support networks was in its infancy. I was not offered any resources for my support and never even realized that was a possibility. I did depend on family, friends and my church which all gave me as much support as possible. How did You Night help you find support and why is support necessary? You Night is a wonderful resource and support network, even decades after my initial diagnosis. There are still some emotional and physical issues that I am dealing with. Due to the radiation I received, I have had additional complications and cancers over the years, and I know that if I should develop other complications that my sisters will be there to support me and offer advice when and if I need it.
Scan to see Rebecca's Interview
"Although it is a very personal decision - if you are comfortable sharing your diagnosis with others, you will be surprised at how many people have also had cancer and want to help support you with compassion, ideas to make life easier while in treatment and knowledge of what is out there that can help."
What is Hodgkins Lymphoma? Hodgkins Lymphoma is a cancer of the part of the immune system called the lymphatic system. As the cancer progresses, it limits the body's ability to fight infection. Lymph nodes in the neck, armpits, or groin may swell. Fatigue, fever, and chills are some symptoms.
Signs & Symptoms of Hodgkins' Lymphoma The most common symptom of Hodgkin lymphoma is one or more enlarged (swollen) lymph nodes. The enlarged lymph node may be in the neck, upper chest, armpit, abdomen or groin. The swollen lymph node is usually painless. Unexplained weight loss — Weight loss caused by lymphoma may be rapid and occur without trying to lose weight. Night sweats — Night sweats associated with lymphoma often leave a person’s pajamas and bed sheets soaked. Sweats can also occur during the daytime. Fatigue — Lymphoma-related fatigue is exhaustion that doesn’t improve with more rest. Source: https://www.mylymphomateam.com/resources/symptoms-of-lymphoma
Methods of detecting Hodgkin's Lymphoma. Imaging tests are used to look for signs of Hodgkin's lymphoma in other areas of your body. Tests may include X-ray, CT and I positron emission tomography (PET). A procedure to remove a lymph node Can Hodgkin's lymphoma be detected in blood test? Blood tests aren't used to diagnose HL, but they can help your doctor get a sense of how advanced it is and how well you might tolerate certain treatments. The complete blood count (CBC) is a test that measures the levels of different cells in the blood. People with HL can sometimes have abnormal blood counts.
How is Hodgkin's Lymphoma treated? The main treatments for Hodgkin lymphoma are chemotherapy alone, or chemotherapy followed by radiotherapy. Occasionally, chemotherapy may be combined with steroid medicine. Surgery isn't generally used to treat the condition, except for the biopsy used to diagnose it.
The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
Heidi Rhea
Green Ribbon Ambassador representing
Cholangiacarcinoma (Bile Duct) Cancer Survivors
114 RIBBONS 2022
Heidi's Story
How did you first learn you had Cancer? I arrived home from a month in Malawi, Africa, on my second mission trip and had asked my husband, who had come home earlier, to make me a doctor’s appointment for the day I came home because I was so miserable. I met with a family practice doctor I had never met before. After talking with Dr. Rochelle Schiro, she sent me to have lab work at Ochsner Clinic and called me later to tell me that my liver numbers were not right. She told me that I had an MRI scheduled for the next morning and that I had a subsequent appointment with her for later that day. That is when I feel I had my first miracle - she diagnosed me with Cholangiocarcinoma, also called Bile Duct Cancer, a rare, aggressive, and very often fatal cancer in 24 hours. My second miracle was to have survived for over 11 years. Could you feel or see the tumor/mass, or was this something that had to be detected with a scan, etc.? What made you want to go seek an opinion? I began scratching my body en route to Malawi, so I knew it was not a tropical African disease. I was scratching every inch of my body for the entire month I was there and was absolutely miserable. I tried creams and Benadryl, and nothing helped. I was also fatigued and frequently nauseous but did not connect it to my scratching. At the airport going home, my friend told me my eyes were yellow. I was jaundice. so I was very happy that I had an appointment when I got home to find out what was going on. What generally are the causes of this type of cancer (what exposure risks, lifestyle choices, etc.)? These are the risk factors and diseases associated with bile duct cancer: aging, alcohol, diabetes, obesity, family history, inflammatory bowel disease, smoking, HIV infection, liver flukes, viral hepatis, cirrhosis, and bile duct stones. Were you shocked that you had this type of cancer? Yes, I had never heard of this cancer, like most people! With four generations of cancer in my family of colon cancer and breast cancer, I was not surprised to get cancer, but Cholangio……what? Never heard of it, nor could I say or spell it! I Googled it when I got home, and it absolutely terrified me to read the statistics for this cancer. Fifty (50%) percent of those diagnosed die in the first year, often within months, weeks or even days, because they are misdiagnosed for up to two years. Only 5-15% survive over five years. I was truly a miracle!!
How many people a year are diagnosed with this type of cancer? About 8,000 people a year are diagnosed, and two-thirds are 65 and older, however, now so many young people in their 20s, 30s, and 40s are being diagnosed with this type of cancer. What are the side effects that you have had to experience because of this cancer? I had pain in my abdomen, my entire body itched, and I was fatigued and nauseous. Then with chemo, I had extreme fatigue, loss of appetite, a metallic taste in my mouth, neuropathy, hearing loss, bad chemo brain (neurologist said I had mini strokes), constipation, and diarrhea. Is this cancer treatable and if so, how is it treated? With Breast cancer, five years is the marker - is this the same for your cancer? Bile Duct Cancer is not curable, however, if they can surgically remove the cancer, you have a greater rate of success. This cancer has a high recurrence rate and often metastasizes to other body parts. If you have made it to five years, it is remarkable. There were not many chemo options 11 years ago, but now they have more and some targeted just for this cancer. It is important to get genetic testing to find your mutations to see what clinical trials you can participate in, if needed. It is really important to find a doctor who has experience with this cancer because it is rare, and you want the best of care. What type of doctors do you see for this type of cancer? It is very important to get an oncologist and surgeon that have experience and knowledge for this rare cancer. The Cholangiocarcinoma Foundation.org is a wonderful resource to find doctors and hospitals for this cancer. When you were diagnosed, did you feel like you needed a support network, and were resources offered to you for support? Everyone needs support when going through cancer, someone who can relate to what they are going through. I could find no one who had this cancer in my area or anyone who even knew of anyone with this cancer. It took me six years to find the Cholangiocarcinoma Warrior Facebook page for patients, where I finally connected with other people with my cancer. It was wonderful to finally “meet” people with my cancer. However, I had survived for six years and was doing well by then and most of them were not. They told me about the Cholangiocarcinoma Foundation Conference in Salt Lake City. I considered going but didn’t want to because I was doing so well and most were not. But my CCA Warrior friends said that I need to come to give people hope that they can survive this cancer. Sadly, most do not survive over five years. I got a scholarship to go to the conference in 2018. and it changed my life in so
many ways. I finally got to meet people in person with my cancer and have never bonded so quickly with people! We all became instant friends. I have gone every year since then as a volunteer (except for two virtual conferences) and have become actively involved with them in several ways. I am blessed to still be alive, and after my first conference I decided that I needed to do something to help others. I started a nonprofit charity called "A Rhea of Hope" that raises awareness and funds for the Cholangiocarcinoma Foundation and to offer some financial help to Louisiana patients diagnosed. I don’t want others to go years without any support or help like I did. How did You Night help you find support and why is support necessary? To be with other women who have cancer and chemo and radiation, even if it is not the same cancer, can provide some support for you. We connect and form a wonderful bond of sisterhood. We become stronger and more self-confident with the You Night activities. We also learn about other cancers, and I was happy to let people know about my rare Cancer.
"My advice to others is to trust your gut and if something does not feel right in your body, keep going till you find out what is wrong. If you are diagnosed with bile duct cancer, it is critical to get a second opinion. It can help provide you with more information about the best treatment plan. Find a doctor that has experience with this cancer. Go to cholangiocarcinoma.org for reliable information and support for this cancer. This is one of the best resources in the world for this cancer. Find a support group like Cholangiocarcinoma Warriors Facebook. Cancer is expensive, search for resources in your community to see what they can offer to help you such as the American Cancer Society and local cancer clinics, such as Mary Bird Perkins or the Gulf Region Rare Cancer Specialists. Accept help from your friends and family; they want to do something to help you. Go to the Cholangiocarcinoma Foundation Conference (apply for a scholarship) if you can and find out all the latest information from the leading doctors, researchers, and pharma from all over the world."
Never give up hope.
Scan to see Heidi's Interview
What is Cholangiacarcinoma? Cholangiocarcinoma is a rare cancer that starts in your bile ducts. Bile ducts are thin tubes that bring bile (a fluid that helps you digest food) from your liver and gallbladder to your small intestine. Most people receive a cholangiocarcinoma diagnosis after the cancer has already spread outside of their bile ducts. Bile duct cancer (cholangiocarcinoma) is rare. About 8,000 people in the United States are diagnosed with it each year Image source: MedIndia.net
Main Signs & Symptoms Abdominal pain. Your skin or the whites of your eyes turn yellow (jaundice), you may also have itchy skin, darker pee and paler poo than usual. loss of appetite or losing weight without trying to. feeling generally unwell. feeling tired or having no energy. a high temperature, or you feel hot or shivery.
Methods of detecting bile duct cancer Techniques used to diagnose bile duct cancer include ultrasound, computerized tomography (CT) scans and magnetic resonance imaging (MRI) combined with magnetic resonance cholangiopancreatography (MRCP). MRCP is increasingly being used as a noninvasive alternative to ERCP
Methods of treating bile duct cancer Sadly, most cases of bile duct cancer cannot be cured. Instead, treatment is most commonly used to relieve symptoms.Treatment may include the following: surgery to remove the cancer, which may include partial hepatectomy. stent placement or percutaneous transhepatic biliary drainage as palliative therapy, to relieve jaundice and other symptoms and improve the quality of life. The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
COMMUNITY CONNECTIONS IN LOUISIANA A Rhea of Hope wants to be a resource for patients and families dealing with the trauma of dealing with Cholangiocarcinoma. If you are diagnosed with it or know of someone who has been, please contact us. Also at the Oktoberfest, we invite cancer resources and nonprofits to set up a table to share what they have available to help patients and families. www.arheaofhopela.org
Breathe freely by screening for lung cancer Capital Imaging Services (dba Diagnostic Imaging Services) celebrates the sisters of You Night and life beyond a cancer diagnosis. Reach out and we'll be there to serve our communities in the fight against lung cancer. Computed Tomography (CT) Lung Cancer screening is non-invasive exam that takes approximately five minutes to screen for cancer of the lung. Lung Cancer is the second most common cancer, excluding cancer of the skin. Lung cancer CT screening only helps to find cancer if it is already there. It cannot prevent cancer. The only way to prevent cancer is to stop smoking, if you have not already.
What are the benefits of CT Tomography? Screening can find cancer at an earlier stage, when it is easier to treat. Screening may also find diseases in the chest other than lung cancer that may need to be treated. For people who are eligible for screening and decide to get screened, the chances of finding cancer early are higher. Finding cancer early generally means that there are more treatment options available. Offering Saturday morning appointments for further convenience Wonderful care from our technologists - gentle, calm and reassuring Save money when having exams not fully covered by insurance and subject to a deductible
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Rachel Strain Grey/Silver Ribbon Ambassador representing
Brain Cancer Survivors
120 RIBBONS 2022
Rachel's Story
How did you first learn you had Brain Cancer? I have always suffered with migraines, and I began having some vision issues, I saw a ring of fire, my legs that same day gave out on me at work. I went to my primary care doctor, and she sent me to have my optic nerves checked. My eye pressure was three times what it was supposed to be. I was then sent immediately to a Neuro Ophthalmologist, then for an MRI. The next morning, I was seeing a Neurosurgeon to discuss having emergency surgery so that the tumor could be removed. Could you feel or see the tumor/mass, or was this something that had to be detected with a scan, etc.? What made you want to go seek an opinion? No, I could not see the tumor, it had to be diagnosed with an MRI. When I look back on things, I had a lot of pressure on the right side of my head, the tumor had no more space. My migraines became more frequent, and they started to be in the early morning. I trusted my feelings, I knew something was off. I just wasn’t sure what it was. What generally are the causes of this type of cancer (what exposure risks, lifestyle choices, etc.)? “Other than radiation, (which I never had), no known lifestyle-related or environmental factors are clearly linked to brain tumors. Most gene changes are probably just random events that sometimes happen inside a cell, without having an outside cause.” Were you shocked that you had this type of cancer? Yes, I was very shocked that I had Brain Cancer. Everything happened very quickly, within three days of finding the tumor, I was having my surgery. My husband was my rock, making sure that everything was getting done that needed to be. My best friend Tricia, (who is a nurse) got on a plane and came to meet us as soon as I told her what was going on. She helped John to find out exactly what needed to be done. She was there to answer questions we were not sure of. She also helped with our son, Matthew, making sure he was being cared for. My son, my buddy, just him being by my side and trying to understand what I was going through was comforting. He has no idea just how much. I love you! My husband made sure he took me to my doctor appointments and especially my radiation appointments. (Something about me leaving the office when they told me I was going to have to wear a mask and be bolted to a table by my head every day for an hour for the next six weeks- I didn’t like too much. I left (ran out) from the first radiation appointment until my husband coaxed me to go back inside. I love you John, thank you for not giving up on me and loving me unconditionally, through sickness and health. You are my rock!
How many people a year are diagnosed with this type of cancer? What is the age range? How many women? Brain and other nervous system cancer represents 1.3% of all new cancer cases in the U.S. This year, an estimated 23,880 adults (13,720 men and 10,160 women) in the United States will be diagnosed with primary cancerous tumors of the brain and spinal cord this year. Brain tumors account for 85% to 90% of all primary CNS tumors. What are the side effects that you have had to experience as a result of this cancer? During the chemo and radiation treatment I lost my hair and struggled with the typical side effects of nausea, fatigue, brain fog and vision issues, specifically my depth perception and peripheral vision. (I couldn’t even walk into a room if there were any type of patterns on the floor, I would feel like I was going to fall through.) Other side effects include personality changes, depression, communication issues, difficulty with learning, concentrating, problem solving, planning and decision making. For several years after the craniotomy, I suffered with what felt like zaps/shocks on the right side my head since the nerves were healing. This still happens today, but just doesn’t seem to hurt as much. Pain from the fluid in the void of the tumor caused swelling in my brain and would cause a lot of pain and migraines. Some days, I felt like a turkey, when the side of my head would swell, I would tell my family, I was done for the day. I have lost many memories from the past, but starting to put things back together with the assistance of pictures and discussions. (Thank God for notebooks and alarms, helps to keep me on track.) I am sensitive to bright lights, and weather either extreme cold or heat will cause me to have migraines. The migraines have gotten better due to ongoing treatments. I am always trying to learn new skills to rebuild what I have forgotten. I also have learned to deal with these obstacles the best I can since I am “Blessed” to have woken up today. Is this cancer treatable and if so, how is it treated? With Breast cancer, five years is the marker - is this the same for your cancer? Brain cancer can be treated depending on many factors, such as the type of tumor, the grade, as well as your age and personal health situation. Certain biomarkers are used to evaluate and base your treatment. There are more than 100 distinct types of primary brain tumors, each with its own spectrum of presentations, treatments, and outcomes. No, when you are diagnosed with a primary Brain Cancer, you generally won’t be told that you are in remission. However, when you have your follow up MRI, and you are told there is No New Evidence (NNE) that’s GOLD! I was told that I had less than a 7% chance of surviving two years. I am very grateful to be here going on 10 years! What type of doctors do you see for this type of cancer? I saw an Oncologist who specialized in Brain cancer, a Neurosurgeon for the craniotomy, a Neuro Ophthalmologist for all my vision issues, (it changed a lot the first few years) a Radiation Oncology Specialist and also a neurologist.
When you were diagnosed, did you feel like you needed a support network, and were resources offered to you for support? I did feel like I needed a support network, however everything I read 10 years ago was just doom and gloom. I stopped researching things, and just tried to live my best life. I spent time with my family, my friends and God. Like I told my doctor when I was diagnosed, I didn’t want to know my life probability. God is the only one with the blueprint for my life and He is the only one that can say when my time is up. I am so thankful that I didn’t bring that additional negativity of being told my life expectancy into the whole mix, I don’t know where I would be today. How did You Night help you find support and why is support necessary? Yes, You Night is very necessary. You realize that you are not the only one feeling the way that you are, feeling alone, angry, tired, confused and withdrawn. When I became involved with You Night, I didn’t know how to express myself, l didn’t know how I felt with the struggle of going through cancer. Not until listening to the other ladies talk about each of their own journeys and how each person was dealing with their own emotions did we realize that we were all going through the five stages of grief. You Night provided me with a way to recognize these feelings of denial, anger, bargaining, depression and finally acceptance. They helped me to connect my life, love more and to accept peace. They reminded me that I was not a statistic, and not to be ashamed that I am alive. Accept the fact that I am a Survivor, I am a Warrior that has been beating cancer now for the past 10 years. I am very thankful to all the ladies I have met, the friendships we have built and the continuing love that has been given to me these many years. I am truly grateful and blessed.
"As hard as it may sound, “It is what it is!” Live your life, love your family, travel if you can and surround yourself with people that are going to still treat you the way you were before you were given the diagnosis of Cancer. Stay as positive as you can. A I told my friends and family to be patient with me, talk with me, ask me questions, let me cry and vent when I needed to, but also call me out if I am stuck in my own pity party. Trust me, I heard to get off the “pity pot” and to “pull myself up” quite a few times. I was and still am grateful for it. Remember, when someone is diagnosed with Cancer, please don’t leave us. Please know that we need you; we need your friendship, your support and your love. We are not asking for solutions; we just need to tell someone how we feel and not keep it all bottled up. We know that you don’t understand the way it feels, and we hope you never do. We just hope that you will listen, love and pray for us. We need all the support that we can possibly get! Sometimes people feel it safer for them not to say anything and to leave you alone - they don’t know how to deal with you going through cancer; they don’t want to say the wrong thing. What you need to know is that it hurts us more when you say nothing at all. I am so very thankful for my family and my friends that have stayed by my side."
Scan to see Rachel's Interview
What is Brain Cancer? A brain tumor is a mass or growth of abnormal cells in your brain. Many different types of brain tumors exist. Some brain tumors are noncancerous (benign), and some brain tumors are cancerous (malignant). Brain tumors can begin in your brain (primary brain tumors), or cancer can begin in other parts of your body and spread to your brain as secondary (metastatic) brain tumors. How quickly a brain tumor grows can vary greatly. The growth rate as well as the location of a brain tumor determines how it will affect the function of your nervous system. https://www.mayoclinic.org/diseases-conditions/brain-tumor/symptoms-causes
Signs & Symptoms
Persistent Headache
Dizziness
Mental confusion
Pins & Needles
Body Fatigue
Nausea
People may experience: Headache: can be acute or persistent Muscular: difficulty walking, muscle weakness, problems with coordination, weakness of one side of the body, or weakness of the arms and legs Whole body: dizziness, fatigue, or vertigo Gastrointestinal: nausea or vomiting Sensory: pins and needles or reduced sensation of touch Cognitive: inability to speak or understand language or mental confusion Also common: balance disorder, blurred vision, difficulty speaking, personality change, seizures, or sleepiness
Methods of detecting brain cancer Magnetic resonance imaging (MRI) and computed tomography (CT) scans are used most often to look for brain diseases. These scans will almost always show a brain tumor, if one is present.
How is brain cancer treated? Unfortunately, you can't prevent a brain tumor. You can reduce your risk of developing a brain tumor by avoiding environmental hazards such as smoking and excessive radiation exposure. Brain tumors are treated with surgery, radiation therapy and chemotherapy. The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
Lori Bentley Peach Ribbon Ambassador representing
Endometrial Cancer Survivors
124 RIBBONS 2022
Lori's Story
How did you first learn you had Endometrial Cancer? I first learned I had this type of cancer in 2018 while visiting Dr. R. Spears' office for my regular well woman checkup. During this particular visit, I discussed with Dr. Spears some unusual symptoms that I was experiencing such as debilitating pelvic pain and unusual spotting. Little did I know that the end result of this visit would result in a cancer diagnosis. Could you feel or see the tumor/mass, or was this something that had to be detected with a scan, etc.? What made you want to go seek an opinion? The cancer tumor wasn't physically seen, but after a series of tests, scans and a biopsy, it was later determined that I had cancer and I was immediately referred to one of the best oncologists in the New Orleans area, Dr. P. Cheung. What generally are the causes of this type of cancer (what exposure risks, lifestyle choices, etc.)? The causes of this type of cancer varies by each patient. According to ACS, the exact cause of endometrial cancer is unknown, but there are some risk factors such as interactive hormones that become abnormal and develop into cancer tumors. Were you shocked that you had this type of cancer? Yes, I was absolutely shocked when I was diagnosed because there was no known family history of this type of cancer in my family. I was the first and only person to be diagnosed with Endometrial Cancer in my family, and when my doctors told me that I had cancer, I cried immensely. After the shock of being told I had cancer began to wear on me, because of my faith in God, I prayed for a miraculous healing and He answered my prayers!! How many people a year are diagnosed with this type of cancer? There are approximately 70,000 women diagnosed with endometrial cancer each year. According to ACS, EC affects some women during the menopausal stage. The age range is 60 and is uncommon in women under the age of 45.
Is this cancer treatable and if so, how is it treated? Depending on the stage and type of cancer, endometrial surgery is the most common type of treatment. I chose the surgery option and treatment plan and proactively continue to attend follow-up appointments and visits with my doctors to check for signs of reoccurrences, etc. What type of doctors do you see for this type of cancer? The type of doctors I see for endometrial cancer are my gynecologist, oncologist, primary care physician and specialist as well. When you were diagnosed, did you feel like you needed a support network, and were resources offered to you for support? My main support network when I was diagnosed with cancer was, and still is, my faith in Almighty God! My very supportive family and friends played a huge part in supporting me and praying for me as well! Additionally, Dr. Cheng introduced me to Touro's amazing support groups - also including GIRL Talk (Gaining Insight Into Real Living) and START (Survivors Thrive and Recover Together) support groups. Recently, I was introduced to You Night Empowering Programs, and it has been an amazing experience! How did You Night help you find support and why is support necessary? You Night has been such an inspiration & a blessing in my life! Sending a big Thank You to Lisa McKenzie and her entire staff for allowing me to be a part of this amazing organization. You Night has allowed me to evolve and share my testimony and cancer story publicly for the first time on their platform, and it has been an amazing experience. Before You Night, I was considered a semi-private, introverted individual, but since I've been a part of the You Night experience, I have tremendously evolved and have had the opportunity to meet, encourage and uplift so many cancer survivors and warrior sisters, etc.!
"My advice to Survivors and Warriors: Be Encouraged! Never Give Up! Keep The Faith! (Hebrews 11:1) Healing and Blessings are inevitable when we live on the promises of God's word. "
What is Endometrial Cancer?
Endometrial cancer is a type of cancer that begins in the lining of the womb (uterus). Most cases occur in women after age 55. If left untreated, endometrial cancer can spread to the bladder or rectum, or it can spread to the vagina, fallopian
(cont'd) tubes, ovaries, and moredistant organs. Fortunately, endometrial cancer grows slowly and, with regular checkups, is usually found before spreading very far. Endometrial cancer starts in the lining of the uterus — the endometrium. Being overweight or obese greatly increases a woman's chance of developing endometrial cancer. Other risk factors include age, family history, a diagnosis of polycystic ovary syndrome and prior use of the breast cancer treatment drug tamoxifen.
Signs & Symptoms of Endometrial Cancer
Bleeding or discharge not related to your periods
Difficult or painful urination
Pain or mass in the pelvic area
Bleeding or discharge not related to your periods (menstruation) — over 90 percent of women diagnosed with endometrial cancer have abnormal vaginal bleeding. Postmenopausal bleeding. Difficult or painful urination. Pain during intercourse. Pain and/or mass in the pelvic area.
Methods of detecting endometrial cancer An endometrial biopsy is the most commonly used test for endometrial cancer and is very accurate in postmenopausal women. It can be done in the doctor's office. A very thin, flexible tube is put into the uterus through the cervix. Then, using suction, a small amount of endometrium is removed through the tube.
Risk Factors: Changes in the balance of female hormones in the body. A disease or condition that increases the amount of estrogen, but not the level of progesterone. A rare type of ovarian tumor that secretes estrogen. Older age.
How is endometrial cancer treated?
Starting menstruation at an early age — before age 12 — or beginning menopause later. Obesity increases your risk of endometrial cancer. This may occur because excess body fat alters your body's balance of hormones. Hormone therapy for breast cancer. An inherited colon cancer syndrome, Lynch Syndrome.
Treatment for endometrial cancer is usually with surgery to remove the uterus, fallopian tubes and ovaries. Another option is radiation therapy with powerful energy. Drug treatments for endometrial cancer include chemotherapy with powerful drugs and hormone therapy to block hormones that cancer cells rely on.
The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
Collette Marietta
Gold, Blue and Burgundy Ribbon Ambassador representing
Adenoid Cystic Carcinoma Cancer Survivors
128 RIBBONS 2022
Collette's Story How did you first learn you had Adenoid Cystic Carcinoma (ACC) and could you feel the tumor? I was always a healthy and athletic child. In September of my senior year of high school, I felt a cyst about the size of an “M&M” behind my ear at my jawline. My parents took me to an ENT who thought it was an inflamed or infected gland. After treatment with antibiotics did not reduce the size, the doctor felt it was benign and suggested we remove it. We didn’t think it was serious, so we did not get a second opinion or look for an experienced ENT Oncology Surgeon. During surgery, they found the tumor was the size of a small egg, and my facial nerves were all wrapped within it. They took it out and hoped it would not have affected my facial muscles. Speech therapy brought everything back to normal except numbness. They suspected because my facial nerves were involved that I had this for a long time (how long - I was only 17). I had over 100 stitches around my face, neck and ear, and I looked like Frankenstein. The pathology came back that it was ACC of the parotid gland, which is one of your salivary glands. After this, we went to Mayo and MD Anderson for treatment plans. What generally are the causes of this type of cancer (what exposure risks, lifestyle choices, etc.)? The underlying cause of ACC is not known. It does not appear to be inherited as there are almost no known cases among family members. In addition, no apparent link has been established to environmental factors such as exposure to tobacco, alcohol, or viruses. The current best explanation is that random genetic alterations occur as cells divide in secretory glands. Were you shocked that you had this type of cancer? My family and I were shocked. I missed my senior year of high school, but I did go to college and enjoy that time. When I got engaged, my parents suggested my fiancé and I see the ENT Oncologist so he understood what to expect. Again, I was shocked as the doctor explained we should not plan to have children until I was 28 years old. This type of cancer can reoccur within ten years. How many persons a year are diagnosed with this type of cancer? ACC tends to appear more often in individuals between the ages of 40 and 60, with 58 being the median age. About 60% of patients with ACC are females. What are the side effects that you have had to experience as a result of this cancer? After being diagnosed and getting opinions at Mayo and MD Anderson, they suggested two treatment options. First, was a radical surgery to remove that side of my jaw, tissues, glands, and hearing. This had proven to be the standard of care with the best survival rates. Secondly, the suggestion was to receive the maximum amount of radiation to the head and neck area in hopes of catching any remaining cancer cells from reproducing and spreading throughout my body. My parents felt the first radical option was not acceptable for an 18-year-old girl. So, we opted for the radiation taken at Ochsner’s in New Orleans. In 1980 radiation was not as specific as it is today. So, Lord knows where all the radiation went, and we would find out later in life. I cannot complain about the radiation. It did not bother me much except a little hair loss, and my skin was almost black. But the hair grew back, and the skin went back to normal. I was more upset about missing my senior year. From 1980 to 2011, I had a normal life. I was not able to get pregnant, but we adopted two children from Russia, which was great. In 2011, the nodules on my vocal cords turned to thyroid cancer, and I had to have them removed. The frustrating part was they suspected it was in both thyroid lobes, but my insurance would only pay for one at a time. So, on Wednesday I went under
anesthesia and had the left lobe removed. The pathology showed cancer; so the following Wednesday, I went back under anesthesia and had the other lobe removed. Typical treatment would have been radiation, but I had taken the maximum allowed for my body. I was good until 2013, when I went for my annual mammogram, and I had a tumor in my left breast. It was Ductal Cancer and had aggressively left the duct; all within a year between mammograms. I had a bilateral mastectomy with implants. My oncology scores were low, so the suggested treatment was radiation. I could not do that. A year later, I had a hysterectomy just to be safe in case it had spread there. My cancer was feeding off the estrogen. Bad news: I was thrown into Menopause and more bad news: I could not take anything estrogen based to help with the hot flashes and night sweats. Again, all good until 2016 when I started to lose my hearing on the left side. Of course, it was cancer too. Squamous cell growing from inside of my ear canal, and it had broken my ear drum. This was a HUGE surgery, 11.5 hours, three days in ICU and four days in the hospital. I had an ENT oncologist that removed the tumor and clear the margins to make sure they got all the cancer. Unfortunately, that included losing my hearing on that side. But I did get to keep my ear, which was a debate between the doctors, fearful it would become necrotic, and I would be back in surgery removing the ear and building a shelf for my glasses. I had two microsurgeons. They removed two feet of thigh skin and tissue and placed it in my neck area to fill the empty spaces. This time I got smart, and I phoned friends and family and asked them to come stay a week with me. I had five weeks of company that helped me, my husband, and kids. As a cancer survivor; the cancer does not bother me, I have no choice but to move forward. But to watch my family and friends want to help and feel so helpless is what is the most upsetting to me. I had two children in high school at that time. My friends and family were priceless. They watched movies with me. I would take a pain pill, and they would have a glass of wine, equal, right? They cooked meals and froze meals, cleaned the house, went shopping and all things that would take stress away from my husband. This was a tough surgery, 30 staples in my thigh from where they grafted skin. I am guessing 100 stitches in my neck area. Again, the treatment suggestion was radiation, and I could not do that. I tried to get a Cochlear implant for the lack of hearing, but after three appeals, the insurance would not pay for it. Luckily, I have good hearing on the right. After this cancer, I finally went to a genealogist to see why I was on cancer number four. He felt my DNA has some missing or too many of something. They did conclude that cancers 2-4 were related to the radiation. I will not go into depth, but I also have a dark spot in my left eye we have been watching for five years, and I cannot tell you how many skin cancers I have had in my head and neck area. Small price for surviving. During COVID. my bad luck the breast implants I received were recalled due to causing cancer, so I had a DIEP flap procedure where they take the fat and make real breasts. Then, when I had my COVID vaccination, my lymph nodes enlarged. Given my history I had them removed and all were benign. That surgeon suggested I do some genetic testing that was recently approved. They came back positive for PMS1 and ATM2. This means I am at a high-risk for the following cancers: Breast, throat, esophageal, colon and pancreatic, Now I have an endoscopy and colonoscopy every year and scan my pancreas just to catch things early if it shows up. Is this cancer treatable and if so, how is it treated? Going back to the original ACC, because it is so slow to grow, chemotherapy has not proven to be advantageous. Surgery and radiation are the standard of care. Many patients live ten or more years after being diagnosed. It spreads to various parts but does not get you for many years. What type of doctors do you see for this type of cancer? I have a cancer doctor for every day of the week. For ACC, an ENT Oncologist. I had a radiation oncologist, but it has been too long for that. I have an ophthalmology oncologist for the dark spot in my eye, and Dermatologist for all skin cancers. Of course, I have a psychiatrist because no one has four to five cancers and is happy go lucky.
When you were diagnosed, did you feel like you needed a support network, and were resources offered to you for support? For ACC, I was too young and naïve. I just wanted to go to the University and go through sorority rush and forget about the cancer. My support group found me. Sloan-Kettering was doing a clinical study looking at pediatric patients that were diagnosed with ACC. This led me to a support group on Facebook (ACCOI). I have made some great friends on there and learned so much from them. There are 743 members, - some are family. From this group, there are three of us that have survived the longest. I am third at 42 years surviving this cancer. I feel so blessed; many have not survived past the ten-year mark. The main help I get is what to expect. I have lost four teeth in the past year. I have had dry mouth since 1980, which causes teeth decay and is the reason I always have a drink with me. Unfortunately, I cannot have them all pulled because they fear the jaw will come out too. I would never make it on “Survivor”. Other issues are jaw pain, swallowing issues, and choking issues. Once a week, my husband jumps up during dinner and asks if I am okay, as my face turns red. The worst follow-up issue from all the cancers, which started after the Squamous but could be related to the radiation, is neck and lower back pain. I have been seeing a great pain management doctor. I have had many injections,nerves being burned and recently a discectomy. I do not feel it is under control, I just get by daily. I think I will eventually need to have spine surgery. At the age of 59, I am just debating - do I want to do that or just enjoy life? How did You Night help you find support and why is support necessary? Unfortunately, I lost both of my parents by 2015. Luckily, I have a wonderful husband for over 26 years and a brother I am close to. I always felt I could handle things on my own. I was private about my health issues and worries. I have a strong Christian faith, and I did and still do a lot of praying. Once I finally gave in and joined You Night in 2019, it was like the sky opened like a breath of fresh air. I know I have a large group of women that I can discuss anything with, call them, and they would be to me in 30 minutes. No one has my type of cancer, but we all have struggled, and we all have a solid faith in God. I thank God for pushing me towards this group. So thankful for Lisa McKenzie starting this group.
"You are not in this alone. God is watching over us all. If you fear you have something, do not delay in checking it out. The earlier you catch something the better chance you have to treat it and survive. I have three things that make me get up every day. First, I am not afraid to die, I know where I am going, and I cannot wait to see my parents and other family and friends. Secondly, I have had a great life, and I am so thankful for that life. Lastly, I work in healthcare, and I see the poor quality of life people have in later years. I am okay to go a little early. From Tim McGraw’s song “Live like you were Dying”. A friend who I lost to cancer always said; “when we are together having fun, the pain goes away, and we forget about the Big "C"."
Scan to see Collette's Interview
What is Adenoid Cystic Carcinoma? Adenoid cystic carcinoma (ACC) is a relatively rare form of cancer that most commonly develops in the salivary glands or other regions of the head and neck. ACC can occur in other parts of the body, such as the breast, skin, cervix in females, prostate gland in males, and various other areas. Adenoid cystic carcinoma (ACC) is a rare type of cancer that forms in the salivary glands. It can also affect your throat, mouth or other parts of your body, including your tear or sweat glands. While ACC is slowgrowing with a high five-year survival rate, it often comes back after many years.
Signs & Symptoms of ACC The initial symptoms of ACC depend on the location of the tumor. Early lesions of the salivary glands may appear as painless, usually slow-growing masses underneath the normal lining of the mouth or skin of the face. Lump in mouth, Abnormal area in lining of under tongue mouth
Difficulty swallowing, Hoarseness
Numbness in jaw, face, tongue
Bump in front of the ear, Paralysis of a facial nerve
A lump on the roof of the mouth, under the tongue, or in the bottom of the mouth An abnormal area on the lining of the mouth Numbness of the upper jaw, palate, face, or tongue Difficulty swallowing Hoarseness Dull pain A bump or nodule in front of the ear or underneath the jaw Paralysis of a facial nerve
Methods of detecting ACC ACC is diagnosed after a series of tests and a biopsy. This rare form of cancer most often develops in the salivary glands, but it may also form elsewhere in the body. Certain tests like imaging tests can help your doctor determine whether the cancer has spread. Imaging tests can also give details about the tumor size, type, and cancer stage. This article describes how adenoid cystic carcinoma is diagnosed.
Methods of treating ACC Surgery External-beam radiation therapy Neutron and proton radiation therapy Physical, emotional, and social effects of cancer
Chemotherapy for metastatic AdCC Targeted therapy for metastatic AdCC Remission and the chance of recurrence If treatment does not work
Find support Adenoid Cystic Carcinoma Organization International www.accoi.org The purpose of ACCOI is to create a worldwide community of ACC patients and supporters who share information, support and hope while working together to help develop a cure for ACC. The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
Michelle Ripoll Zebra Awareness Ribbon representing
Neuroendocrine Cancer Survivors
132 RIBBONS 2022
Michelle's Story
How did you first learn you had Neuroendocrine Cancer (NETS)? I went through multiple tests, a capsule endoscopy showed varices in my small intestine which my GI doctor felt I could have liver disease so she ordered an MRI of the abdomen and that is how it was found. Could you feel or see the tumor/mass, or was this something that had to be detected with a scan, etc.? What made you want to go seek an opinion? I could not feel any tumor, but it was uncomfortable to lie flat on my back or stomach. I had vague GI symptoms for years that got progressively worse over approximately four years. From indigestion, to facial flushing, to passing out on my bathroom floor from vomiting all day. What generally are the causes of this type of cancer (what exposure risks, lifestyle choices, etc.)? It is unknown what causes NETS, but certain types can have a genetic component. Were you shocked that you had this type of cancer? I was absolutely completely shocked. Cancer was the last thing I ever thought my doctor would tell me I had. How many people a year are diagnosed with this type of cancer? It's estimated that more than 12,000 people are diagnosed with NETS every year, and approximately 175,000 people are living with this disease in the U.S. This number has been increasing for years. I'm not sure how many are women. The average age for NETS is 60 years old and most common among women. What are the side effects that you have had to experience as a result of this cancer? The worst part is the gas, bloating and diarrhea daily if I eat greasy, fatty, sugary foods. I also on occasions experience facial flushing. Is this cancer treatable and if so, how is it treated? With breast cancer, five years is the marker - is this the same for your cancer? I'm treated with an injection once a month to help with the flushing and to slow the progression of the disease. I will require this injection every month for the rest of my life. I have had extensive abdominal surgery back in 2017 that removed the majority of the tumors in my abdomen 68 tumors were removed total. I've also had three chemo-embolization procedures to treat the remaining tumors that spread to my liver in 2019.
Scan to see Michelle's Interview
What type of doctors do you see for this type of cancer? It is imperative to see a Neuroendocrine tumor specialist for this type of cancer. There are only a few in the country - one being at East Jefferson Hospital and Ochsner-Kenner. When you were diagnosed, did you feel like you needed a support network, and were resources offered to you for support? I didn't feel comfortable going to a regular support group for cancer, but I felt some Facebook groups were extremely helpful and made me realize I was not alone in this. How did You Night help you find support and why is support necessary? You Night helped me be around women that know what it's like to hear the words, "You have cancer." It's helped me become more confident and resilient overall. With a cancer diagnosis, you worry about the unknown or the what-ifs or "is this how I die"? I have experienced stress and anxiety since then, but I've found being involved in such a wonderful group of women, we call a sisterhood, has helpful with those negative feelings.
"My biggest advice is, if you know something is wrong or feels "not right" with your body, Get a Second Opinion.
Don't accept, "I don't feel we need to make any changes" as the final answer from your doctor. It can't hurt to see another doctor just to make sure you're not going crazy. I had every GI ailment under the sun and was on 12 different medications for my stomach. Today, I need none of them."
What is Neuroendocrine Cancer?
Neuroendocrine cells are present in various body parts normally and perform their function with efficiency. But sometimes due to the responsibility of various factors and syndromic associations these cells become uninhibited in their proliferation and their death cycle is abolished. These cells then create various neuroendocrine tumors which have high metastatic potential. Neuroendocrine cancer is a condition in which the neuroendocrine cells develop into tumors. A neuroendocrine tumor may grow slowly or aggressively and spread to other parts of the body. Many people do not develop symptoms and the tumor is detected incidentally. The gastrointestinal tract is the most commonly found origin of the neuroendocrine tumors.
Signs & Symptoms
Abnormal vaginal bleeding Reduced energy level / fatigue / lethargy
Discomfort when urinating . Loss of bladder control.
Pain during or after intercourse
Why the Zebra?
Unintentional weight loss
Altered menstrual cycle. Vaginal discharge.
How is neuroendocrine cancer treated?
Methods of detection
Treatment for a neuroendocrine tumour (NET) depends on a number of things including where the cancer is, its size and whether it has spread. NETs grow at different rates, but they often grow very slowly. Some might not grow at all for months or years. So you might not need treatment right away. Your doctor might just keep an eye on it with regular tests. You can find out more about the treatment you are likely to have in the treatment pages for each type of NET.
Blood/Urine Tests: A blood test to measure chromogranin A, a protein produced by tumor cells, is also sometimes performed after diagnosis to watch the tumor's response to treatment. Chromogranin A is a tumor marker and not a hormone; it is not part of diagnostic testing.
In the cancer world, neuroendocrine tumors are the zebras. Represented by this analogy because of their rarity, neuroendocrine tumors make up just 2% of nationally treated cancers. Neuroendocrine tumors can originate anywhere within the body and are difficult to detect, often remaining undiagnosed for quite some time.
What type of specialists do you see if you have neuroendocrine cancer? Primary Care Provider: Prevents, diagnoses, and treats diseases Endocrinologist: Treats metabolic and hormone disorders Gastroenterologist: Focuses on the digestive system and its disorders Neurosurgeon: Specializes in nervous system disorders Surgeon: Performs operations to treat disease Oncologist: Specializes in cancer
The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
Katie Brupbacher Teal Awareness Ribbon representing
Ovarian Cancer Survivors 136 RIBBONS 2022
Katie's Story
How did you first learn you had cancer? It was Labor Day weekend, and I bought an armoire that I found on Facebook. I practically loaded the armoire into my SUV by myself. That night, I had waves of pain in my abdomen. I figured I pulled something in my gut fooling with the armoire. I called my general practitioner who told me to go to the emergency room. Before I went, I took a shower and looked at my reflection in the mirror. My abdomen was hard and distended, just like I had been when I was three months pregnant. I actually googled “Oldest pregnant woman’. Was I having a miscarriage? But there was no blood. I went to the ER and after bloodwork and imaging, they told me at 1:00 am that I had a large mass and admitted me into the hospital. They suspected it was ovarian cancer, and that suspicion was confirmed the next day. I had surgery, six rounds of chemo and was on a clinical trial for three years with a targeted therapy. Could you feel or see the tumor/mass, or was this something that had to be detected with a scan, etc.? What made you want to go seek an opinion? I had a nerf football-sized tumor in my abdomen and had no idea. I was jogging in the morning and couldn’t understand why my middle age stomach pooch wasn’t going away. I blamed it on aging. What generally are the causes of this type of cancer (what exposure risks, lifestyle choices, etc.)? Higher risk factors include : Most women are diagnosed with Ovarian Cancer between the ages of 55-65 years old. Genetically, some are BRCA +, the gene that is prevalent in Breast and Colon cancer. (I did not carry that gene), or a family history of ovarian, breast or colon cancer. There is a higher percentage of women who don’t have children (I had three), women who don’t take birth control, which I didn’t, and women of Asakashi Jewish descent. Were you shocked that you had this type of cancer? Absolutely! I had no family history. I had never heard of ovarian cancer. How many persons a year are diagnosed with this type of cancer? Over 20,000 women are diagnosed in the United States every year. It is seen mainly in middle aged women but has been detected in girls as young as three years old.
What are the side effects that you have had to experience as a result of this cancer? During the chemo treatment, I lost all my hair and struggled with the typical side effects: nausea, fatigue, bone pain and swelling from the steroids. I was on a clinical trial medication after chemo for three years that had a wide variety of side effects: heart palpitations, gastrointestinal issues, bone and joint pain and memory issues. Is this cancer treatable and if so, how is it treated? With Breast cancer, five years is the marker - is this the same for your cancer? Ovarian cancer is the deadliest of the gynecological cancers. Its symptoms are vague and usually caught at a later stage. Most cases are diagnosed at Stage 3 (which I am). It has a very high rate of recurrence, 85% at Stage 3. Typical treatment is surgery and chemo and see if it works. If there’s recurrence, they usually tweak the chemo to a different cocktail to see if it’s more effective. Radiation is typically not used for this type of cancer. Cancers are typically given a five-year prognosis. Mine was 35% I hit my five-year mark this September, so I feel like I have beaten the odds. What type of doctors do you see for this type of cancer? You must see a Gynecologic Oncologist. Do not see or be operated by a gynecologist. Your prognosis is much higher with any Gynecologic Oncologist. When you were diagnosed, did you feel like you needed a support network, and were resources offered to you for support? At first, the shock of the diagnosis and the immediate surgery, chemotherapy and medical care was all consuming. Once that was digested, I wanted to find Ovarian Cancer groups, but there were none locally. I did find an online resource, Inspire.com, that had women globally with Ovarian cancer that we could exchange information about latest treatments, side effects, clinical trials. One of the women got me involved with a program called STS, Survivors teaching Students. Once a month, we have a zoom meeting with Ovarian cancer survivors who tell their stories to LSU interns and teach them the symptoms. I also learned of a camp in Montana that I go to every year for survivors.
How did You Night help you find support and why is support necessary? As I mentioned, after the initial shock and immediate medical intervention, you go through this period of ‘now what?’ I heard about You Night three years after my diagnosis. I had a wonderful experience at camp in Montana with other survivors but was so grateful to find my tribe close to home. Three things You Night gave me: 1) Took me out of my comfort zone, snapped me out of that little malaise I was feeling. and dolled me up and made me walk on a runway stage! The experience was like jumping out of a plane! Terrifying and exhilarating all at the same time! 2) Introduced me to my tribe. Other warriors going through the same type of stress, pain, anxiety, and joy. We pray for each other, support one another, laugh and cry with each other. These are my people. 3) Opened me up to new opportunities. I just joined the Bionic Babes, dancers of Hope. I’m going to dance in Mardi Gras parades! I am now living again.
"Being diagnosed with cancer is like going through a hurricane. Your life is now pre and post storm. Things will never be pre storm. Once you give up that notion, and you’re okay with post storm, you’re good. Also, you’re not a statistic. They tell you not to google, but I didn’t have that control. Odds are, I wouldn’t be here right now if they were true. There is hope. Keep thinking positively about tomorrow. Exercise if you can. It’s the only clinically proven variable."
What is Ovarian Cancer? Ovarian cancer is a cancer that begins in the female organs that produce eggs (ovaries). Ovarian cancer often goes undetected until it has spread within the pelvis and belly. At this late stage, ovarian cancer is more difficult to treat and can be fatal. Ovarian cancer often has no symptoms in the early stages. Later stages are associated with symptoms, but they can be non-specific, such as loss of appetite and weight loss. Surgery and chemotherapy are generally used to treat ovarian cancer. It affects about 1 in 70 women in the U.S and is the second most common gynecological cancer behind only endometrial cancer. The average age at diagnosis is 63. Worldwide about 240,000 women are diagnosed each year with ovarian cancer. Image Credit: National Cancer Institute
Signs & Symptoms
Feeling the need to urinate urgently or often
Pelvic or abdominal pain
Occasionally, there can be other symptoms of ovarian cancer, such as: Changes in bowel habits, Abnormal bleeding – Any post-menopausal bleeding should always be checked by your primary health care provider or doctor. Extreme fatigue Unexplained weight loss Often ovarian cancer symptoms are mistaken for other ailments and causes, as they can be subtle and experienced by women who do not have ovarian cancer. They can be confused with symptoms of other less severe illnesses, especially gastrointestinal complaints (ex IBS or Irritable Bowel Syndrome), leading to frequent misdiagnosis. Most patients are only identified in the advanced stages of the disease when it becomes more difficult to treat.
Trouble eating or feeling full quickly
Bloating
Methods of detecting ovarian cancer The Pap test does not check for ovarian cancer. The only cancer the Pap test screens for is cervical cancer. Since there is no simple and reliable way to screen for any gynecologic cancer except for cervical cancer, it is especially important to recognize warning signs, and learn what you can do to reduce your risk. The 2 tests used most often (in addition to a complete pelvic exam) to screen for ovarian cancer are transvaginal ultrasound (TVUS) and the CA-125 blood test. TVUS (transvaginal ultrasound) is a test that uses sound waves to look at the uterus, fallopian tubes, and ovaries by putting an ultrasound wand into the vagina. In some cases, a healthcare practitioner may order a CA-125 test when you have a pelvic mass in order to help determine the cause. Some healthcare providers may order a CA-125 test and a transvaginal ultrasound at regular intervals when you are at high risk of developing ovarian cancer.
How is ovarian cancer treated? Treatment for ovarian cancer usually involves a combination of surgery and chemotherapy. Surgery: Doctors remove cancer tissue in an operation
. Chemotherapy: Using special medicines to shrink or kill the cancer. The drugs can be pills you take or medicines given in your veins, or sometimes both.
The information contained herein is for informational purposes. Please consult your physician for any health problems or questions.
Camille Reynolds
Gold Ribbon Ambassador representing
Children Cancer Survivors patient of Children's Hospital of New Orleans, LCMC Health 140 RIBBONS 2022
Meet Camille Reynolds
What type of cancer were you diagnosed with? Acute Myeloid Leukemia At what age were you diagnosed? 7 months What kind of treatment did you have? Chemotherapy Are you still in treatment? No! I'm in full remission!
What advice would you give to others?
"Trust the team who is taking care of you, and --don't be afraid of cancer. Cancer should be afraid of YOU!"
Dr. Charles Hemenway is a board-certified pediatric hematologist oncologist, and serves as Service Line Chief for the Center for Cancer and Blood Disorders at Children’s Hospital New Orleans and Professor of Clinical Pediatrics at LSU Health New Orleans. In his role, Dr. Hemenway serves as clinical lead over the nationally recognized and newly renovated and expanded Center for Cancer and Blood Disorders, which treats more than 1,100 children with cancer or blood disorders each year, more than all other facilities in Louisiana combined. For more than 35 years, Dr. Hemenway has worked to advance the field of pediatric hematology oncology through research, teaching and training, and by providing specialized care for children to ensure the best possible outcomes. He most recently served as Director of the combined MD/PhD program at the Stritch School of Medicine at Loyola University Chicago. A graduate of Middlebury College and the University of Massachusetts Chan Medical School, he completed his residency in Internal Medicine and Pediatrics at University of Florida/Shands Hospital and his fellowship in Pediatric Hematology/Oncology at Duke University Medical Center.
Charles Hemenway, MD Children's Hospital New Orleans www.chnola.org
A note from Deborah Tonguis: As You Night’s Program director, I have the honor of helping design and execute year-round empowering group experiences that feel more like a sisterhood of support than traditional cancer survivor support programs. Our programs are scaffolded to meet the needs of three distinct groups. Our 6-month SPARK life skills workshops are designed for those who desire personal survivorship care. Our 9-month RUNWAY PROGRAM provides for interpersonal growth within class members as they train for their night to shine together on stage. And finally, our year-round ALUM PROGRAM focuses on outreach and giving back to the cancer community both within You Night and in the New Orleans metropolitan area. Each step of the way, we focus on bringing healing and hope to our participants. Supporting someone through a health crisis like cancer is one of the most rewarding experiences I have ever had. And You Night allows me to do what I love, with the people I love, every day.
You Night programs are made possible by donations to the WE LIFT YOU UP Fund, a 501(c)3 public charity. EIN 82-4444545 Research shows that women who are involved in socially active support groups have better health outcomes.
142 RIBBONS 2022
Pictured You Night Programs Director Deborah Tonguis and members of the Spark Leadership Team
You Night offers empowering group experiences that are alternatives to traditional cancer survivor support groups. We host a variety of year-round programs that help women find a sisterhood of support and path forward after a cancer diagnosis. Want to learn more? Visit: www.younightevents.com and submit an interest form. Spark Free monthly workshops Retreats Socials ScART Scar Art Group Painting Experience StoryCrafting Program
Runway Empowerment Program Leadership Opportunities Advocacy Opportunities
THE YOU NIGHT SISTERHOOD
EMPOWERING CANCER SURVIVORS SINCE 2013
WWW.YOUNIGHTEVENTS.COM EMPOWER ONE. IMPACT MANY.
DR. JIMMY ELLIS ONCOLOGIST TOURO INFIRMARY COMPLETE CANCER CARE
YOU NIGHT 2022 RIBBONS ROCK THE RUNWAY
SCART SPONSOR Dr. Jimmy Ellis invites you to visit the ScART Gallery in the Courtyard of our October 1st event, or view photos and stories on-line by visiting: www.scartevents.com ScART is a program offered by You Night Events where surgical or emotional scars are turned into beautiful works of art for emotional healing.
Scan to see a ScART Event at West Jeff
I wanted to add the phrase ”here there be monsters,” which you sometimes see on ancient ocean maps. In my world, an arrow would point to the monsters off the map. There be monsters, but you cannot see them. Besides, cancer is monster enough.
ISLANDS OF HOPE by Michael Holtz, ScART Participant BRANSON, Mo. — I can scarcely wrap my mind around the events of the last two days. I’ve been privileged to participate in a retreat sponsored by Fight Colorectal Cancer for the 2023 Class of Fight CRC Ambassadors. I am one of those ambassadors. This weekend has been an opportunity to meet my fellow ambassadors from around the country, connect with Fight CRC staff members, and share our stories through photos, video and art. The art part was especially affecting.
One by one, each of us shared our paintings. Where the scars came from. The vision we created. Why we chose the colors we used. Our stories on canvas. I shared the basics of my cancer journey, and then how because of treatment we missed things like going on vacation for two years. Then, how, in the between time from ending my my working career with the American Cancer Society Cancer Action Network and moving to the Knox County Health Department Sarah planned a trip for us to Daufuskie Island, South Carolina. Paradise with golf carts and some of the best seafood I’ve ever put in my mouth. Beach, ocean, and the occasional alligator.
I use the word a lot, but it was truly sacred. We experienced a ScART class, where we created art using our scars. Whether external from surgeries or accidents, or internal from psychological trauma, the experience of creating art from something some might consider ugly was one of those experiences that helps define your life’s journey.
“We love to escape to the beach,” I said. Most often, St. Simons Island, Ga.
The experience started before today’s facilitated session with homework: take photos of your physical scars, then draw them. There was more, focused on body dysmorphia and other aspects, which set the stage for today.
All the more so as we, one by one, shared our art.
I had not looked at my colectomy scar since my surgery 10 years ago. Had no cause to look at it as it is located on the bottom of my belly, under my stoma.I won’t share the photo I took, but it has the look of a railroad bed. I can still see the tracks where the staples were. My stoma is a scar, as is the slash on my left bicep, an accident of teenager-hood wherein I was helping my mom install a window air conditioner and she dropped her end when the phone rang. The raw aluminum edge sliced through my arm. And, there’s my newest scar, on my neck from this past summer’s parathyroid surgery. In the facilitated session we were given canvasses, our choice of colors, and a small pot of ”mud” to re-create our scar drawings, then give them texture. As I was drawing my scars, I saw a collection of islands. Small land masses surrounded by water. The beach, the ocean, probably a lighthouse somewhere, although I didn’t get into that level of detail.
I have written before that water is sacred. Here in Branson, the retreat house has a beautiful view of Table Rock Lake. We were standing on sacred ground.
Nods of recognition of shared experiences. Tears. Grief. Anger. Confusion. Laughter. Smiles. Hugs. One by one we shared our stories, each one knitting together our hearts. This group of strangers now a family. As I turned my painting around, I said, “these are my islands.” As I looked out at the group, I saw my islands. Refuge among fellow travelers.
My islands of hope. Learn more about ScART at www.scartevents.com
Rowena Kay McCormick-Robinson
Owner, Chic Nouvelle Model Management
20/08/2022
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With thanks to the many individuals who contribute to the success of our year-round programs. EXECUTIVE PRODUCER / FOUNDER Lisa McKenzie, CEO YOU NIGHT CORPORATE Angela Becnel, Logistics and Administration Deborah Tonguis, Programs Shannon Wilson, Social Media & Marketing Joy Kampen, Alumnae Programs SPONSORSHIPS, DONATIONS CHAIRS Lisa McKenzie, CEO Greg Kayser RUNWAY COACHES, MODEL MANAGEMENT AND CHOREOGRAPHERS Leslie Legania-Shelby, Positive Imaging Modeling Rowena Kay McCormick-Robinson, Owner, Chic Nouvelle Model Management, Kymberly Soule', Coastal Fashion Week EVENT LOGISTICS AND REGISTRATION Janet Patton, Registration GRAND AMBASSADORS Deliah Hampton PHOTOGRAPHY & VIDEOGRAPHY Dylan Maras, White Donut Productions Tracie Morris Schaefer and Carol Costanza, Studio U Monica Mixon, Video Editing Witney Arch, Reporter/Editor Troy Perez, Louisiana Organ Procurement Agency, Producer of "The Gifted Life" podcast John Moore, Videography John Bogen, Photography Christina Weeks, Photography Tammy Morosko, Photography Terence Smith, Photography DJ Cushenberry, Photography RIBBONS MAGAZINE CREATOR/DESIGNER Lisa McKenzie RIBBONS MAGAZINE TEAM Joy Kampen Shannon WIlson Halle McKenzie Julie Angelos OFFICIAL STYLISTS 2022 John Herron, Just Breathe Salon Caitlin Picou, Kismet Cosmetics FOOD/BEVERAGE CHAIRPERSON Laura DiRosa VOLUNTEER COMMITTEE CHAIRPERSONS Leticia Rodriguez Kevin Livingston
RIBBON PULL / IN KIND DONATION CHAIR Kathy Judge Shawn Caballero, Erin Coolidge
MASTERS OF CEREMONY Kenny Lopez Peyton Trist Marshall Harris
SPONSOR INTERVIEW CORRESPONDENTS Witney Arch
CORRESPONDENCE Missi Simon
BACKSTAGE & FRONT of HOUSE CREW Angela Becnel Shannon Wilson Monica Mixon Cheryl Dendinger Kelly Love Nicole Justice With thanks to our many volunteers! VENUE AND EVENT VENDORS The Sugar Mill Fancy Faces Air-Effects Skytracker See-Hear Productions Expo Signs Fleur de Lis Event Center Castine Center Elektra Cosmetics Glitter Buffet Crowd Pleasers Carl Mack Presents Riverview Photography Just Ask Rentals SPARK Team Members Deborah Tonguis/Program Director Roycelyn Lewis Mary Jolicouer Renee Girault-Branch Sherry Heller Tambo Hyde Camey Grau Genelle Perez-Sandi Betty Bruce Shanta Burns Darlene Boyne Karen Ziebarth Laura Jackson Jill Allender Lori Bentley ScART Team Members Lisa McKenzie Deborah Tonguis/Program Director Angela Becnel, Logistics Caroline Graham, Instructor Shanta Burns, Instructor Genelle Perez-Sandi Heather Martinez
BOUTIQUES Maiya Boutique J Ashley Gwen's Bridal Boutique Carzoli Designs (headpieces) TRAINING FACILITY Stone Creek Club and Spa House of Memories Event Room
NEW ORLEANS BOARD OF ADVISORS Lisa McKenzie, You Night Founder Walker & Shannon Dupre, Co-Chairs Dr. Scott Sullivan, Center for Restorative Breast Surgery Michael Holmes, Capitol Imaging Services Dr. Jimmy Ellis, Touro Infirmary Dr. Ali Sadeghi, Sadeghi Plastic Surgery Dr. Ralph Corsetti, Tulane Doctors Surgery Chad Deville, Axogen/Resensation Dr. Joyce Varghese, Ochsner Julie Stokes, Flame Consulting Dr. Shelia Rivers Miranda Mantikos, Timeless Beauty Day Spa Vasilli Mantikos Angela Becnel, You Night Logistics Melissa Tatman, You Night Sponsorship Deliah Hampton Holley Haag, You Night Media Relations MEDIA PARTNERS Sophisticated Woman Magazine SOCIAL Northshore St. Charles Avenue Magazine Lake 94.7 WGNO Times Picayune WDSU WGSO New Orleans Local Inside Northside Gambel Communications Edge of the Lake Magazine MEDIA RELATIONS Holley Haag PRODUCER OF THE PRODUCER Elaine Roark
501(c)3 FISCAL SPONSOR We Lift You Up Fund Geri McFarland, CPA
2022 Hospital Partner Sponsor
2022 Platinum Sponsor and Community Partner
2022 Gold Ribbon Sponsors and Community Partners
2022 Silver Ribbon Sponsors and Community Partners
Donations and sponsorships support the WE LIFT YOU UP FUND - a 501c3 public charity dedicated to emotional healing programs for women diagnosed with cancer.
2022 Ribbon Sponsors and Community Partners
Susan Geoghegan, Agent
2022 Hope Sponsors and Community Partners
With support from
The You Night Leadership team is comprised of a small staff, plus dozens of volunteers and local professionals who use their time and talents to help empower women in our community. We thank each and every person who has gone the extra mile to share your passion for our mission and to help make our year-round programs possible.
Witney Arch Correspondent Joy Kampen Alumnae Director
Shannon Wilson, Marketing Director
Deborah Tonguis, Programs Director
Monica Mixon, Video Editor
Lori Bentley Spark Leadership Team
Deliah Hampton Grand Ambassadors Renee Girault-Branch Spark Leadership Team
Angela Becnel, Logistics and Administrative Director
Shanta Burns Spark Leadership Team
Lisa McKenzie You Night Founder Executive Producer
Greg Kayser Sponsor Chair
With many thanks to everyone who helps us year-round! Particulary our hardworking team members!
With additional thanks to these team members, not pictured: Behind the lens: Tracie Morris Schaefer and Carol Costanza, Studio U Photography Behind the lens: Dylan Maras, White Donut Productions (Video Production) Caitlin Picou, Kismet Cosmetics Janet Patton, Ribbons Rock Guest Relations Leticia Sanchez, Volunteer Coordinator John Herron and the stylists at Just Breathe Salon
Karen Ziebarth Spark Team Leader Jill Allender Spark Leadership Team Roycelyn Lewis Spark Leadership Team
Genelle PerezSandi Spark Leadership Team
Leslie LeganiaShelby Model Coach
Darlene Boyne Spark Leadership Team
Kathy Judge In-Kind and Gift Donations
Laura DiRosa Food & Beverage Chair
Holley Haag, Media Relations
Sherry Heller, Spark Leadership Team
Thank you to the team, to all our sponsors, and the hundreds of models who participated!
Rowena Kay McCormickRobinson, Model Management
You Night is a program of the WE LIFT YOU UP fund, a 501(c(3 public charity dedicated to providing empowering programs and a sisterhood of support to any woman with any type of cancer after a cancer diagnosis.
Original art by You Night Programs Director Deborah Tonguis, Head and Neck Cancer Survivor St. Tammany Class of 2017.
WE HELP WOMEN EMBRACE LIFE BEYOND CANCER. To learn more, find support or to get involved, please visit: www.younightevents.com. Click on "2023 Programs" 877-591-5936 x1. We Lift You Up is supported by donations and event ticket sales. EIN 82-4444545