SPECIAL MYTHS OF MAMMOGRAMS
PLUS... WOMEN WHO INSPIRE JILL GRESS & EILEEN MCCONVILLE
THINK PINK INSERT
Sponsored By EWBC
Cara Cappello BREAST PREVIVORS
{ COVER STORY }
55
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
{ COVER STORY }
CARA CAPPELLO BY CHERYL L. KATES I PHOTOS BY MARISA NICODEMUS
CAPPELLO IS A PREVIVOR TO BREAST CANCER What is a previvor? Cara describes this for Rochester Woman Online. “Previvor” refers to an individual who carries a strong predisposition to cancer but has not yet developed cancer. These individuals proactively sought out knowledge to determine if they inherited a gene mutation by having genetic testing performed. I believe knowledge is power and knowing about an inherited mutation gives people the power to take steps that may help reduce one’s risk for cancer or detect cancer at an earlier and more treatable stage. Breast and ovarian cancer risk can be greatly reduced through increased monitoring, preventive drug treatment, or preventive surgery”. Cara personally experienced this journey. In the fall of 2018, after receiving genetic testing, she found out she was in a group of people who are at a high risk for breast cancer. A procedure is available to reduce
the risk of getting breast cancer. The procedure is a Prophylactic Bilateral Double Mastectomy, where both the breasts are removed. Cara indicated a large part of her decision to undergo this procedure was her husband and 2 children who need her to be around. After undergoing the surgery, Cara received the test results back from pathology reports. She received all
the validation she needed to assure her she made the right decision. The pathology report showed pre-cancerous cells were present in her right breast. It was just a matter of time, before Cara developed breast cancer. Cara says, “I am so glad I underwent genetic testing. It saved my life and prevented my developing breast cancer.
In our community, there is not a lot of awareness available to inform people about what a Previvor is. As I was going through my Prophylactic Mastectomy journey, I really wanted to connect with others going through the same preventive surgery. I was looking into support groups for previvors like myself. There are many support groups offered to breast cancer survivors but not for previvors. I knew there were others out there like myself, who learned they were at high risk for development of breast cancer and elected to have a prophylactic mastectomy. Our journey is different than someone going through breast c a n c e r, b u t we still have a journey and need support and advocacy. I longed for connection to others. I needed to feel I was not alone in this journey. I decided I needed to start my own support group to make things happen. This is when I created Breast Previvors ROC. In this journey, it is so important to be able to talk with others that get what you are going through on a local level”.
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
56
“I am so glad I underwent genetic testing. It saved m
my life and prevented my developing breast cancer.�
COVER STORY } } { { SHIFT+CONTROL
{ COVER
“I really wanted to connect with others going through the same preventive surgery.”
Breast Previvors ROC is an organization dedicated to supporting women affected by gene mutations which make them a high risk for breast cancer. Women who are considering lowering their risk of having breast cancer by having a Prophylactic Mastectomy. Through the community and friendship, the group strives to allow women to stand tall and empower each other in our journeys of being a Previvor! The organization hosts monthly meet ups and connects women experiencing this through their Facebook page. In the future, Breast Cancer Previvors will have 59
a resourceful website with a lot of information which is currently under construction. Cara has a background in esthetics/ nails and also worked as a dental assistant. For the past nine years, she enjoys her position as a “stay at home” mom. She is married with two children. She credits her husband as being her biggest supporter. They are married 15 years and during her preventative surgery he was able to take off work and be with her for a month while she recovered. Cara states, “ He is my rock”.
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
Cara overcame many rough times including her parents divorcing and caring for her father after he suffered a stroke and kidney failure. Her first scare with cancer came from skin issues. While in her 30’s after undergoing 24 biopsies Carrie underwent having pre-cancerous areas removed. Her journey with preventative breast cancer started at the Elizabeth Wende Breast Care. Learning she had the Chek2 gene mutation, began her journey as we stated above. Having the breast removal surgery is the
STORY }
{ SHIFT+CONTROL }
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
60
{ COVER STORY } “In this journey, it is so important to be able to talk with others that get what you are going through on a local level.”
first step in the process. Cara also underwent reconstructive surgery which took place last month. She is still recovering from this surgery. Cara plans to continue to grow Breast Previvors ROC with the hopes of building partnerships with other organizations like the Breast Cancer Coalition of Rochester, Elizabeth Wende Breast Care, the Pluta Cancer Center Foundation, Strong Memorial Hospital and Rochester Regional Health. 61
If you are interested in attending the support groups, they are offered monthly. There are women of all ages and the women are at all different stages in the process. To learn more visit BreastPrevivorsROC.com
consideration to sharing my story with others. In this journey it is so important to be able to talk with others that understand what you are going through. I want the community to know there is support”.
Cara by saying, “ My hope is to spread the message of whatever you are going through you are not alone. Support your local Breasties. With your help, we can make a difference in our community. I appreciate your
For more information email them at info@BreastPrevivorsROC.com
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
{ COVER STORY } “ In this journey it is so important to be able to talk with others that understand what you are going through. I want the community to know there is support.”
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
62
“ My hope is message of wh going through alone. Suppo Breas
to spread the hatever you are h you are not ort your local sties.�
PROVIDING SUPPORT FOR BREAST CANCER PREVIVORS BEFORE AND AFTER A PROPHYLACTIC MASTECTOMY.
Breast Previvors ROC is an organization dedicated to supporting women who are breast cancer previvors in the Rochester community. Previvors are individuals who are survivors of a predisposition to cancer such as a gene mutation or have a family history of cancer, but who have not yet had the disease. Together we should stand tall and empower each other through community and friendship, supporting one another on our breast cancer previvor journey. We host monthly support groups as well as connecting women through our private Facebook page. Support your local Breasties! Contact us at info@BreastPrevivorsROC.com Visit us at www.BreastPrevivorsROC.com
SHIFT+CONTROL { { HEALTHY WOMAN } }
MYTHS OF MAMMOGRAPHY BY ELIZABETH WENDE BREAST CARE
A screening mammogram is an important step in a woman’s preventative healthcare routine. Unfortunately, there is a lot of misinformation regarding screening mammography and breast cancer.
local patient population only 4% of the patients we diagnosed last year had a known gene mutation. MYTH Screening mammography should not
Below are the most frequent myths I encounter when dealing with my patients. Dr. Lisa Paulis, Elizabeth Wende Breast Care
Out of every 100 women who have a mammogram; 95 will be told that their mammogram results are normal, and 5 will be asked to return for additional mammogram and/or ultrasound testing. We feel strongly that women should be aware of these statistics to make an informed decision on how they weigh the risk of being one of the women who potentially needs additional workup versus the risk of not screening.
MYTH Annual screening mammography is only important for patients with a family history of breast cancer. THE FACTS Seventy-five percent of women diagnosed with breast cancer have NO family history of the disease. In the general population 12% of women will develop breast cancer in their lifetime and 42,000 Americans will die from breast cancer this year. Women who are at a higher than average risk due to personal or family history, prior atypical biopsy results, certain genetic factors etc. may benefit from additional screening (ultrasound, MRI) and/or genetic counseling. However, the absence of risk factors should not prevent a patient from pursuing screening imaging. In our 67
additional testing in order to determine a true result. In mammography, false positive results can mean anything from additional mammographic views, after which most patients will not require further workup, to ultrasound or minimally invasive biopsy procedures.
Of note, 12% of the cancers we diagnosed in our community in 2018 were in their forties.
be performed in younger patients (ages 40-50) due to false positive results.
MYTH Mammography is ineffective in screening for cancer in women with dense breast tissue.
THE FACTS A false positive is an area that appears abnormal on initial imaging but represents normal tissue on subsequent studies. False positives can generate
THE FACTS Breast density is determined by the proportion of fat and glandular tissue in the breast. The more glandular tissue a patient has, the more “dense”
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
SHIFT+CONTROL { { HEALTHY WOMAN } }
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
68
{ SHIFT+CONTROL }
the tissue is graded. Each patient is assigned a breast density classification on their mammogram which ranges from entirely fatty issue to extremely dense glandular tissue. Small breast cancers can be harder to identify on traditional mammograms in patients with dense tissue, however a newer technology called tomosynthesis (3D mammography) spreads out the tissue to improve detection. Additionally, screening breast ultrasound provides another way to “see through� the density and find small masses. 69
Mammograms remain the most accurate tool available to diagnose ductal carcinoma in situ or DCIS which can be the earliest form of breast cancer we can identify. In patients with dense tissue, consideration should be given to screening mammography accompanied by ultrasound to offer the most comprehensive benefits of imaging. Major health organizations, such as the American Cancer Society, as well as our local imaging community continue to recommend that women
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
should be screened annually beginning at age 40. For more information go to mammographysaveslives.org and talk to your healthcare provider. As the first dedicated breast clinic in the US, Elizabeth Wende Breast Care has been serving the greater Rochester, NY area since 1975, with the latest technology and experienced breast imaging professionals.
{ SHIFT+CONTROL }
EWBC now has Genetic Testing & Counseling in Rochester &Carthage. See our video at ewbc.com ewbc.com
SERviCES AT ouR CARThAGE & ROCHESTER offiCES Latest 3D mammography with results while you wait Screening ultrasound for women with dense breasts Diagnostic Evaluations Genetic Counseling Bone Densitometry
Experience | Accuracy | Results
(585) 442-2190 ewbc.com Batavia | Brighton | Carthage, Geneseo | Greece | Victor
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
70
{ WOMEN WHO INSPIRE }
71
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
{ WOMEN WHO INSPIRE }
JILL GRESS BY JILL GRESS
I was one of those kids that learned way too early about cancer was, I was just 13 when it affected my family and rocked my world. My mom was diagnosed with breast cancer at 42. It was a different time when people didn’t talk about this diagnosis, almost like it was a bad word. There were no pink ribbons, no walks, no advocacy organizations and no support. I remember going to a store that specialized in bras from post mastectomy and watched my mom cry in the dressing room. All I wanted was for her to feel better and for a while she did. My mom started having some back problem but she ignored it because we were in the process of planning my wedding. She was so excited to help me plan it so I thought that all was ok. After getting back from my honeymoon I found out that her breast cancer had metastasized to her bones. She told me she postponed telling me and her starting her treatment as she wanted to have hair for my wedding day.
very vigilant in self breast exams and annual mammograms. Each year I passed one my mom’s diagnosis dates, I felt I was safe. When the BRBC genetic testing first came out, I was scared to have this done thinking I would be positive. I got great advice from my OB/GYN, don’t take the test until I was confident in the treatment should by test come
Less than 2 years later she died at age 52, I was just 24 and 4 months pregnant. The first time I felt my son move was at the funeral parlor. It was so heartbreaking that she wouldn’t be here to help me through the rest of my pregnancy, delivery and become a mom.
back positive. It took me 3 years to finally come to terms that if it comes back positive, I would be prepared to do the recommended treatment which included surgery and medications. I was shocked when mine came back negative. While relieved, I knew that only a small portion of breast cancer was genetic so I remained vigilant.
Because of my mom’s diagnosis, I was
In April 2018, again my world went upside
down. During an annual mammogram, something was seen. This wasn’t unusual, it happened before, but this time the biopsy was positive. I was diagnosed with Stage 1 breast cancer. For a few days, I was so ovaerwhelmed with so many emotions and just hid in my room. I was just a few years older than my mom when she died, was I facing the same short timeframe as she did? I then realized I was doing, dealing with the way my mom had to go through and I didn’t want that. There was so much more available to someone being diagnosed than ever before. I have a house full with my husband, son, Josie (our dog) and the pussycats, our 5 Siamese cats that we have coined the Siamese Catpack (Frank Sinatra, Tony Bennet, Sammi Davis Jr, Dean Martin and Joey Bishop) all Lollypop Farm alumni. I didn’t want this diagnosis to affect them. I volunteer a lot of my time, being on the Board for Sepsis Alliance and volunteering at Lollypop Farm. And from my work with both of these organizations I realized there are a lot of support/advocacy groups out there that could help me. I believe that we should give back as much as we can and I didn’t want that to change
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
72
{ WOMEN WHO INSPIRE }
“In April 2018, again my world went upside down. During an annual mammogram, som positive. I was diagnosed wit
with my diagnosis. I was too strong of a person to let this get me down, so I started reaching out to support groups and learning everything I could. My husband and I have one of those very special relationships. He has always called me his princess so often you will find me wearing a tiara! Many of our pictures of us are of us joking around, he is my best friend. He was my rock as I went through all my doctors’ appointments, surgery and even walked with me during a breast cancer walk this year. The one 73
comment that stuck with me through my treatment that he told me, I love you all of you with or without breasts. I knew there were a lot of support out there and breast cancer wasn’t a bad word anymore. I had the ability to make decisions on my treatment along with my family and doctors. Because of my family history, I decided on a double mastectomy with latissimus flap reconstruction which was done at the same time. This reconstruction utilized my own tissues/muscles which
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
was important to me. With some of the research coming out that some implants are causing some types of cancer I was happy with my decision. The one thing I learned from all the support organizations, there is no right or wrong decision on treatment plan, you need to do what works for you. Everyone is different. While I had some setbacks during my recovery, I am finally on the other side and am not looking back. I do have a new normal, but that’s ok. I am here to have a new one!
{ WOMEN WHO INSPIRE }
mething was seen. This wasn’t unusual, it happened before, but this time the biopsy was th Stage 1 breast cancer.”
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
74
{ WOMEN WHO INSPIRE } “I believe that we should give back as much as we can and I didn’t want that to change with my diagnosis. I was too strong of a person to let this get me down.”
I do have days where I worry about metastasis, but I don’t want that to define me, I want to define it. I have made a commitment to myself to try something new as much as I can. I have taken meditative classes, yoga classes and even went ziplining in Costa Rica. For someone with a slight fear of heights that was huge! I love to travel and have always dreamed of going to Scotland, so that is on my bucket list. I am back to working full-time doing what I love, marketing research. I love to learn about people’s behaviors, attitudes and opinions. I guess that is why I did so much research ahead of time prior to even meeting my first doctor. Being one’s own advocate is important in this journey. The experience that I went through helped me guide my mother in law when 6 months later she was diagnosed with Stage 1 Breast Cancer. I don’t hesitate to share my story with anyone. I do not want anyone to think they are walking alone on this path. There are so many wonderful organizations that can help someone through their diagnosis, treatment and support.
75
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
{ WOMEN WHO INSPIRE } “The one thing I learned from all the support organizations, there is no right or wrong decision on treatment plan, you need to do what works for you.”
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
76
{ WOMEN WHO INSPIRE }
EILEEN HOOPER MCCONVILLE BY EILEEN MCCONVILLE
It was the beginning of the summer in 1997 and I was interviewing, looking to go back to work after being home with my kids for the last 5 years. My son was about to start kindergarten, my daughter was 3, and we decided it was time. I was still breastfeeding my daughter just at night, and when I found the lump one day in the shower, I initially thought it was just mastitis. But I had had that before, and it hurt – a lot. This lump didn’t hurt, and it was definitely different. We had a lot going on, so I ignored it for a couple of months, and didn’t say anything to my husband. At the end of August we were at the State Fair, and I was drawn to the Susan Komen table, where I started to ask some questions. The cat was out of the bag, and my husband insisted I call the doctor. My grandmother had breast cancer when I was in high school, and I think I was just avoiding it because from the little research I had done, I kind of knew this wasn’t good. I went and had a mammogram nothing showed up. The doctor could feel the lump too, so they did a needle aspiration, which came back inconclusive. They scheduled a biopsy for almost a month out, and in the meantime, I got a job in Rochester (we were living in Fayetteville, New York). I started my new job in early October, and on my second day told my manager I had a previously scheduled doctor’s appointment the next day. My husband asked if I wanted him to go with me; I said, ‘No, it’s fine’. My parents happened to be in town visiting though, and they insisted on going with me. The surgeon did the biopsy, and sent some of it right to the lab for a frozen section. To this day, I’m not sure why he did that, except 77
perhaps he could tell from the looks of it things that it was cancer. Several minutes later, I got the diagnosis of breast cancer. It was the Thursday before Columbus Day; they told me they could get me in for surgery on Monday. I spent Friday meeting with an oncologist and plastic surgeon, and called my new manager to explain that I was going to be out for about a month. I had been given the option of having a mastectomy
and chemo, or a lumpectomy and chemo and radiation. My tumor was the size of a golf ball and considered Stage 2B, so I opted for mastectomy and reconstruction. The following Monday, 4 days before my 31st birthday, I had surgery, and 2 weeks later I had my first chemotherapy treatment. I went back to work about a week after that, had my second chemotherapy treatment, and then we moved to Canandaigua before Thanksgiving. I changed oncologists and
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
plastic surgeons, and had my last two chemotherapy treatments at Strong Hospital, finishing up right before New Year’s. My tumor was estrogen receptor positive, so when I finished chemotherapy, I was put on Tamoxifen. I was lucky in that I didn’t experience a lot of side effects. Yes, I lost my hair, and back then the anti-nausea medication was not all that great, so I did get sick. My white blood cell count was annihilated from the chemo, so I had to give myself Neupogen shots each day for a week after each chemo treatment. I was on Tamoxifen for five years, and again, other than some occasional hot flashes, tolerated it well. I didn’t even get kicked into early menopause, which I was kind of hoping for! But all in all, I was still able to take care of my kids and work my full-time job. Looking back, I’m not exactly sure how I managed to do it all – maybe it was a blessing that I was so young and energetic! When I finished treatment, it was a weird ‘what do I do now’ feeling. I had genetic testing done, which came back ‘no mutations found’, and was working to find my new normal. I participated in various breast cancer walks, including a 3 day walk from Baltimore to Washington, DC to celebrate the 5th anniversary of my diagnosis. About 10 years after my diagnosis, I got involved with the Breast Cancer Coalition of Rochester, first attending their Brown Bag lunches on Fridays, then helping start the Young Survivor Soirees, and serving on the Board of Directors as the Young Survivor Committee Chair. I then became a member of the Advocacy Committee, which I am still a part of today. My kids are now 27 and 25; while didn’t really understand what was happening back
{ SHIFT+CONTROL }
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
78
{ WOMEN WHO INSPIRE } “My grandmother had breast cancer when I was in high school, and I think I was just avoiding it because from the little research I had done, I kind of knew this wasn’t good.”
then, and I don’t think they remember much, they did many of the walks with us! Once my daughter was in high school, she started asking questions about my diagnosis and prognosis, and she became interested in getting more involved too. She participated in Relay for Life walks at college, volunteered at Camp Good Days, and then became a camp counselor there. She obtained her Master’s in Public Health with a concentration in Epidemiology (the study of epidemics) and currently has a fellowship with the National Cancer Institute in Bethesda, Maryland. I won’t say my diagnosis was a GOOD 79
thing, but so many positive things have happened in my life since (and maybe even because?) I had breast cancer. One positive is that I have met so many amazing, strong people – men and women – because of being in this ‘club’ that I likely wouldn’t have met otherwise. I actually met one of my best friends in a Myspace group for survivors (hey, it was the mid-2000’s!). I definitely have a different perspective since my diagnosis, and I don’t sweat the small stuff – that’s my goal anyway! So many advances have been made since I was diagnosed 22 years ago – new diagnostic methods, new treatment protocols – but I
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
am still seeing friends be diagnosed each and every year. I’ve also lost several friends and acquaintances to this relentless disease. For all of them – us, really - I continue to advocate for the eradication of this disease, and try to support those who have been diagnosed in any way I can. I am extremely fortunate to be able to say I have not had a recurrence, but I know there are no guarantees. I try to live each day to the fullest, and be grateful for all the good things in my life.
{ WOMEN WHO INSPIRE } “I won’t say my diagnosis was a GOOD thing, but so many positive things have happened in my life since (and maybe even because?) I had breast cancer.”
ROCHESTER WOMAN ONLINE :: OCTOBER/NOVEMBER EDITION 2019
80
WE’RE DONATING 10% OF ALL SALES TO THE BREAST CANCER COALITION OF ROCHESTER THROUGH THE MONTH OF OCTOBER. PLUS WE ARE RAFFLING AN ALASHAN CASHMERE PONCHO, VALUE $250 AT THE END OF THE MONTH!