care
CAN
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for anyone touched by cancer WINTER 2015
Surviving childhood cancer means lifelong
vigilance page 5
New suite offers MRI during surgery Book review: ‘The Emperor of all Maladies’ 6 ways to avoid nausea How to get a good night’s rest Finding hidden prostate cancers Would you consider a clinical trial?
Brought to you by the
YOUR GUIDE
Welcome to the Upstate Cancer Center The Upstate Cancer Center offers a variety of outpatient care for adults and children and is attached to Upstate University Hospital, where inpatient care is provided.
East Syracuse, Manlius and three Syracuse locations, including the cancer center.
Here is what we offer:
Clinical trials for cancer
Medical expertise Whether you have questions about cancer or need help getting treatment or a consultation, call 1-315-464-HOPE (4673). Or, visit upstate.edu/cancer to request an appointment. Diagnosis and treatment The Upstate Cancer Center works closely with imaging and lab services to help get the right diagnosis, quickly. Among the many inpatient services is a bone marrow transplant program, radiotherapy and medical oncology, plus specialists devoted to pediatric oncology. For outpatient chemotherapy infusions, the center offers areas dedicated to youngsters, teens and adults – with space for privacy or interaction. Outpatient radiotherapy includes some of the most sophisticated machines, offering unprecedented precision in treating tumors. Care throughout the region Upstate doctors specializing in hematology and oncology see patients in the hospital, the cancer center and offices in Homer, Oneida, Oswego and Syracuse. Radiation oncology is available in Syracuse as well as Oswego. Cancer rehabilitation specialists from Upstate’s Physical Medicine and Rehabilitation department offer therapy at
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Upstate caregivers can provide more options for treatment by providing access to these national clinical research studies. The upstate.edu/cancer website includes a search function for clinical trials, under the “research” tab. Additional patient services Among services available to patients is a family resource center, which provides library research assistance, and spiritual care, offering music, prayers, Reiki and a meditation room. Nutrition, genetic and financial counseling are available; mental health counseling is available for individuals or groups. Patients and their family members can enroll in smoking cessation classes. A healing environment Gallery-quality art by local artists following a “healing through nature” theme adorns the cancer center. Professional and trained musicians perform daily in the atrium. A fourseason rooftop garden is accessible from the second floor. Thanks for your contributions The first floor of the cancer center includes a wall of names of people who donate annually. Tribute gifts are also welcome. Contact the Upstate Foundation at 315-464-4416 or at foundationforupstate.org ●
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Cancer in kids
INSIDE
BROOME CAYUGA CHEMUNG
Here are the average number of children and adolescents with cancer, per year, for each of the 17 Central New York counties that comprise Upstate University Hospital’s service area. Bear in mind that county populations vary widely. Onondaga, with a population of 468,387, has the largest number of children and adolescents with cancer, while the lower numbers occur in counties with fewer people.
CHENANGO CORTLAND HERKIMER JEFFERSON LEWIS MADISON ONEIDA ONONDAGA OSWEGO OTSEGO
Upstate University Hospital’s 17-county service area (Source: New York State Department of Health)
care ER
for anyone touched by cancer
WINTER 2015
CANCER CARE PUBLISHER Wanda Thompson PhD Senior Vice President for Operations EXECUTIVE EDITOR Leah Caldwell Assistant Vice President, Marketing & University Communications MANAGING EDITOR Amber Smith 315-464-4822 or smithamb@upstate.edu DESIGNER
ST. LAWRENCE SENECA TIOGA TOMPKINS
Survival rates for most childhood cancers have improved dramatically in recent decades. The National Cancer Institute says more than 80 percent of children diagnosed with cancer before the age of 20 survive for at least five years.
= one child
CAN
An average of 85 children are diagnosed with cancer each year in Upstate’s service area. The hospital also treats children from other counties, Pennsylvania and Canada.
Susan Keeter
The Upstate Cancer Center provides the quarterly magazine, Cancer Care, for anyone touched by cancer. Send subscription requests and suggestions to magazine@upstate.edu and request additional copies by calling 315-464-4836. Cancer Care offices are located at 250 Harrison St., Syracuse, NY 13202.
Inside this issue CARING FOR PATIENTS How care is affected by anxiety and depression
page 4
Childhood cancer means a vigilant adulthood
page 5
Suite spot: New operating room offers MRI during surgery
page 6
Improving mammography rates because ‘She Matters’
page 8
Finding hidden prostate cancer
page 9
A call for volunteers
page 10
LIVING WITH CANCER
UPSTATE CANCER CENTER
The biography of cancer
page 11
MEDICAL DIRECTOR Leslie J. Kohman, MD
2 patient authors
page 12
A cake high in iron, magnesium and potassium
page 14
ASSOCIATE ADMINISTRATOR Richard J. Kilburg, MBA The Upstate Cancer Center is part of Upstate Medical University in Syracuse, NY, one of 64 institutions that make up the State University of New York, the largest comprehensive university system in the United States. For information on cancer center patient services, call 315-464-HOPE (4673) or visit www.upstate.edu/cancer. The Cancer Center is located at 750 East Adams St., Syracuse, NY 13210.
ADVICE FROM EXPERTS What you need to know about gynecologic cancers
page 15
How to get a good night’s rest
page 16
6 ways to avoid nausea
page 16
What to ask before agreeing to a clinical trial
page 17
Are you at risk for oral cancer?
page 17
SEARCHING FOR CURES Choosing the proper lung cancer treatment
page 18
What can this protein teach us about cancer cells?
page 19
On the cover: Heather Gangemi, 32, is a survivor of pediatric cancer. She continues to be seen, annually, at the Survivor Wellness Center of the Upstate Golisano Children’s Hospital. PHOTO BY SUSAN KAHN
Upstate Medical University is an academic medical center with four colleges, a robust biomedical research enterprise and an extensive clinical health care system that includes Upstate University Hospital’s downtown and community campuses, the Upstate Golisano Children’s Hospital, and many outpatient facilities throughout Central New York — in addition to the Upstate Cancer Center. winter 2015
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DEPRESSED or anxious
How cancer care may be affected – and what Upstate does about it A study by the national Cancer Aging Research Group, which includes Upstate’s Ajeet Gajra, MD, examined the relationship between age, anxiety and depression in older adults with cancer. Some facts More than half of all cancer diagnoses and almost three quarters of cancer deaths occur in patients older than 65. Depression and anxiety are associated with poorer treatment outcomes, reduced ability to make treatment decisions, decreased adherence to lengthy treatment and longer hospital stays and suicide. The study Researchers looked at data collected on 500 men and women age 65 and older who were about to start chemotherapy. The patients were recruited from outpatient oncology practices between November 2006 and November 2009. To assess their anxiety and depression levels, patients answered a 14-item validated tool survey called the Hospital Anxiety and Depression Scale. The results: anxiety was apparent in 21 percent, and depression was apparent in 13 percent. Researchers compared those results with patient ages, genders, stages of cancer, education levels, social support and other medical problems.
—about depression People with an advanced stage of cancer were likely to have a higher level of depression. Researchers found that depression was more likely in older patients who had multiple medical problems, poor social support and advanced cancer. They determined that screening or assessing such patients for depression is important. And, they suggest interventions that reduce loneliness and isolation could help.
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As age increased, anxiety levels decreased. Some possible reasons why: Older adults 1. are more likely to take life on a day-by-day basis, 2. have learned to adapt to their strengths and weaknesses, 3. may have developed better emotional regulation and the ability to cope with life’s challenges, 4. are at a stage of life where they are focused on making peace with their lives, and 5. may benefit from a shortened time perspective, allowing them to concentrate on what matters at the moment. —about anxiety and depression People who lack social support were likely to have higher levels of anxiety and depression. People with multiple medical problems were likely to have higher levels of anxiety and depression. At Upstate A dedicated social worker and a psychiatrist who specializes in oncology are available at the Upstate Cancer Center. Both of these people can help mediate problems associated with depression and anxiety. In addition, the cancer center helps reduce the stress for patients by offering: • services for cancer care located within the same building; • multidisciplinary care that allows patients to meet with each member of their care team in a single afternoon; and
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• customized care, which means caregivers consider the social effects of various treatment regimens as they make recommendations. Gajra impresses upon medical students and colleagues the importance of screening patients for depression and anxiety and treating them appropriately, since both can impact cancer treatment. ●
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CARING FOR PATIENTS
Always vigilant Cancer as a child means she keeps watch as an adult BY AMBER SMITH
She worries about freckles. She gets concerned if her sleep habits are off. When she felt a lump in her breast, it ruined her weekend. As a pediatric cancer survivor who is now 32, Heather Gangemi is on high alert. She was diagnosed with Hodgkin’s lymphoma at the age of 14. Her lymph nodes swelled to the size of golf balls. Normally they should be the size of peas, which enlarge to the size of marbles during sickness. What she hoped would be a bad case of allergies or a cold turned out to be cancer. “Up until the moment the oncologist told me that I had cancer, cancer never entered my mind. I would have never guessed that cancer would happen to a healthy kid like me,” Gangemi said during the ribbon cutting for the new Upstate Cancer Center last summer. She received four months of chemotherapy and a month of radiation therapy at Upstate University Hospital before she was considered in remission. She remembers nurses and doctors who made her feel beautiful when she was bald, who helped her participate in making health care decisions even as a young teen. At first her appointments were every three months, then every six. Now she has checkups every year. Today she has lived more than half of her life as a cancer survivor. “I live a normal life, but I spend quite a bit of time worrying about my health. I’ve had shadows on x-rays that should be nothing, and thankfully turned out to be nothing, but are scary just the same,” she said.
WILLIAM MUELLER
Heather Gangemi, 32, of North Syracuse survived Hodgkin’s lymphoma, which was diagnosed when she was 14. She spoke at the ribbon cutting for the new Upstate Cancer Center in July.
Complications from childhood cancers and their treatments may occur many years later, so experts recommend survivors be carefully monitored for the rest of their lives. “The specific late effects that a person who was treated for childhood cancer might experience depend on the type and location of his or her cancer, the type of treatment he or she received, and patient-related factors, such as age at diagnosis,” the American Cancer Society points out on its website. Cancer had a huge impact on her life, and when it came time for college, Gangemi knew science would be in her future somehow. She had a desire to work in the field of oncology. She briefly thought about medical school. Then she looked into radiation technology. Neither seemed right for her. “I don’t think I would have been able to handle it. I think I would have gotten too invested in every single patient.” So Gangemi found her passion at Bristol-Myers Squibb in East Syracuse. There, she assists the division that manufactures oncology medications. ●
Neurosurgical suite includes MRI Heather at 14.
Satish Krishnamurthy, MD, removed a brain tumor from a man in the first operation to take place in the Upstate Cancer Center’s new surgery suite.
The new surgery suite includes a powerful 3 tesla magnetic resonance imaging machine, giving surgeons the ability to get a scan before closing incisions.
Ordinarily the neurosurgeon would find the patient’s family in the waiting room. “I think we took out most, if not all, of the tumor,” he would tell them, “but we will get a scan to make sure we took it all out.” Sometimes after the scan, he would have to arrange a second operation to remove any tumor that was left behind.
That means Krishnamurthy’s conversation has changed. Now he can tell patients’ families, “I know we took all the tumor out.” Learn more about the new surgical suite on pages 6 and 7. ●
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An exceptional surgical suite T
he most advanced imaging options
available are part of Upstate’s newest surgical suite, which allows patients to undergo magnetic resonance imaging during an operation. The clarity of the 3-tesla MRI is ideal for conditions that involve the brain, spine and musculoskeletal system, including brain tumors, epilepsy and cancer.
1. Director of pediatric neurosurgery, Zulma Tovar-Spinoza, MD, reviews the patient’s magnetic resonance images prior to beginning surgery.
Its powerful imaging capabilities provide exceptional detail. Surgeons are able to immediately verify the complete removal of tumors, verify the placement of probes and minimize the impact to healthy tissues. This helps improve patient outcomes. ● To hear an interview about the neurosurgical suite, go to upstate.edu/healthlinkonair and search for “neurosurgery.” 4. Once the neurosurgeon secures the laser in the patient’s brain, the door to the MRI suite opens, and the patient — still under anesthesia — is moved into the scanner.
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●
2. This 3-D computerized image shows the inside of the patient’s brain and the 3.1-millimeter opening — a bit larger than the tip of a pen — for the laser.
5. MRI technologists help position the patient in the scanner.
3. Using a laser and MRI guidance, Tovar-Spinoza will remove a tumor through a melting process called ablation.
6. Tovar-Spinoza reviews the intraoperative scans to verify the tumor removal is complete. PHOTOS BY ROBERT MESCAVAGE
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Battling breast cancer by knocking on doors Lisa Bigelow
Lawrence Diamond-Walls Mary Harris
BY SUSAN KEETER
Lisa Bigelow says her father’s mindset was that he could avoid cancer simply by not getting tested for the disease. She believes early detection is the best protection – and she is helping to spread that word. “Both my parents died of cancer. I wish they were still here. That’s why I’m involved,” Bigelow says. She is part of a team of resident health advocates that is raising awareness of breast cancer in their community. Armed with tenants’ lists, sign up sheets, and flash cards with cancer facts, the team goes door to door at Syracuse’s Pioneer Homes, a public housing complex with 1,194 residents.
She Matters advocate Martha Chavis-Bonner helps her neighbor, Edward Moody, sign his wife up for a mammogram at the Patricia J. Numann Center for Breast, Endocrine and Plastic Surgery at the Upstate Specialty Services Center. Moody’s wife, says Chavis-Bonner, is typical of many African American women: “So busy working and taking care of her family that she doesn’t take time for her own health.”
Department have prepared the team to do its health outreach work. The team completed a resident health advocate education program, designed and taught by Upstate staff and other local health experts. A $50,000 grant from the Susan G. Komen Foundation pays for the program.
Their goal is to get women age 40 and older from Pioneer Homes and the neighboring community to have annual mammograms, and to deepen their understanding of breast cancer prevention, diagnosis, treatment and survival, which often depends on early detection.
The statistics are daunting. Nationally, African American women are more likely than all other ethnic groups to die of breast cancer. In Syracuse, more than 160 women are diagnosed with breast cancer each year, and the incidence of breast cancer is higher in Onondaga County than in the US as a whole. (In Onondaga County 132 women per 100,000 will develop breast cancer in a year. Nationally, the number is 124 per 100,000.)
So far, the resident health advocates — Bigelow, Martha Chavis-Bonner, Lawrence Diamond-Walls and Mary Harris — have enrolled more than 200 women in the “She Matters” breast cancer program, and 70 have had mammograms so far. (As a male, Diamond-Walls talks with men about male breast cancer and encourages them to get the women in their lives to get mammograms.)
Most of the women enrolled in She Matters have health insurance, reports project manager Linda Veit. Those who don’t are referred to the health department’s cancer service. Through that service, the uninsured women (five so far) receive a host of cancer screenings — colorectal, pap and clinical breast exams. Then, they return to Upstate for mammograms.
What’s the process? The team works with Upstate staff to host educational sessions at the community room at Pioneer Homes, which are followed by mammogram “parties” at the Upstate Harrison Specialty Services Center. Reminder calls are made, and referral sheets are given to attendees so they can recommend friends and neighbors.
Harris says being a community health advocate means being there for the women in She Matters. “We’ll be your support system,” she promises. “We’re here if you feel nervous. We’re here if you need help.”
Statistics, personal experiences, and training and services from Upstate and the Onondaga County Health
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Plans include extending the She Matters program to other Syracuse Housing Authority residences. To find out more about the program, call She Matters at 315-464-6303 or 315-217-5825. ●
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LIVING WITH CANCER
PSA mystery solved at Upstate
ROBERT MESCAVAGE
Paul Kruger, who lives in Dexter, NY, works at Fort Drum, north and east of Watertown. He underwent five biopsies of his prostate before a physician at Upstate located the cancer that was causing his elevated prostate-specific antigen test results. BY SUSAN COLE
The uncertainty and the waiting were the hardest parts of Paul Kruger’s battle with prostate cancer. Kruger, 56, a heavy equipment mechanic at Fort Drum, knew his elevated prostate-specific antigen (PSA) level indicated trouble, but after five years of examinations and five painful biopsies, he was no closer to knowing why his level was so high. Then his wife, Nora, read about the precision biopsies the urology team at Upstate University Hospital was using. The Krugers immediately booked an appointment.
Six months after the surgery, Kruger is cancer-free and back to his normal routine, keeping the snow plows running at Fort Drum. He said he is grateful that his Upstate team worked so quickly and effectively to remove his cancer. “We’ve had family members with cancer, and it was a death sentence,” Kruger said. “To come to Upstate and meet Dr. Vourganti and have all my questions finally answered and my cancer gone? It’s amazing.”●
Urologic oncologist Srinivas Vourganti, MD, ordered a magnetic resonance imaging scan for Kruger, using a powerful 3 tesla machine. The MRI revealed areas of suspicion within the prostate and gave Vourganti some targets for the biopsy that would remove cells for laboratory analysis. When the test results came back, Kruger learned that about one-third of his prostate was taken over by cancer.
This red triangle is a 3-D image of Paul Kruger’s prostate. The circular colored areas are areas of suspicion, as indicated by a magnetic resonance imaging scan. Using Upstate’s UroNav fusion biopsy system, Srinivas Vourganti, MD, hones in on areas where cancer may be hiding. The cylinders show where the urologic oncologist removed tissue samples for biopsy. Cancer cells were found to occupy about a third of Kruger’s prostate, in the green circular region.
The uncertainty over, he shifted his focus to cope with a cancer diagnosis. “All the waiting, not knowing and not understanding is what is hard,” he said. “Every time I went through another biopsy, I thought, ‘When are they going to find it?’” After Vourganti explained his options, Kruger decided to have his prostate surgically removed in a minimally invasive operation last June. Vourganti said the operation was a success. “Mr. Kruger’s tumor was well away from the erectile nerves, so I was able to perform a bilateral nerve-sparing surgery,” he described.
WHAT’S THE PSA? The PSA test measures the blood level of prostate-specific antigen, a protein that is produced by the prostate gland. The higher a man’s PSA level, the more likely it is that he has prostate cancer. However, there are additional reasons for having an elevated PSA level, and some men who have prostate cancer do not have elevated PSA. SOURCE: NATIONAL CANCER INSTITUTE
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WANT TO JOIN? Adults interested in volunteering in the Upstate Cancer Center can call 1-315-464-5180. Volunteers are needed daytime from Monday to Friday, to assist patients in the infusion areas and to staff a “Comfort Cart.”
Volunteers dispense comfort
SUSAN KAHN
Linda Bigsby distributes drinks and snacks in the infusion area of the Upstate Cancer Center.
The gesture may seem small, but for the cancer patient who feels chilly during infusion, the offer of a warm blanket provides much more than creature comfort.
“I do the simplest of things, but people are so appreciative,” says Linda Bigsby of Camillus, a volunteer assigned to the Upstate Cancer Center. After retiring from a career as a nurse, Bigsby found time to give back to her community. She has volunteered the past five years at Upstate University Hospital. She started in the pediatric intensive care unit and then transferred into oncology. “I liked it immediately,” she said. “I love the constant interaction. You almost become friends with the patients.
You end up spending time talking with them, looking at photographs, hearing about their lives.”
Bigsby offers snacks if a patient is hungry, magazines if he or she wants to read, companionship if he or she is alone. She says she has learned to tell when people wish to be left alone, and when they want company. Bigsby and the other volunteers from the cancer center are going through the American Cancer Society’s Cancer Resource Volunteer program so they are familiar with the resources available from the society. That way, as the volunteers get to know patients, they will be able to suggest appropriate programs and services that might be helpful, along with the creature comforts they provide. ●
COMPREHENSIVE STROKE CENTER The first and only comprehensive stroke center in the region. We offer three levels of specialized neuroscience care for stroke patients.
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Stroke Center
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History, hope combine in cancer biography BY LESLIE KOHMAN, MD
Did you know that cancer has been described in Egyptian mummies? Or that chemotherapy was developed to treat childhood leukemia, and its use in adult cancers is a much later development? Or how the National Cancer Institute has had intermittent periods of congressional underfunding since its inception in 1937, very similar to what we are experiencing now? Or that the American Cancer Society started with a volunteer “Women’s Field Army” that took to the streets in the 1930s to raise awareness and funds? Or that until recently, cancer was a shameful secret that people did not discuss openly? All these and many more fascinating anecdotes are described in “The Emperor of All Maladies: A Biography of Cancer,” written by Siddhartha Mukherjee, MD, a medical oncologist at one of the major teaching hospitals in Boston. Since President Richard Nixon signed the National Cancer Act in 1971, which became known as the beginning of the “War on Cancer,” cancer treatments, investigations and publicity have steadily increased. Countless people have dedicated their lives to learning about cancer and how to
LIVING WITH CANCER
treat it, to the great benefit of innumerable patients. Nonetheless, we have not won this war yet, and the science of cancer is so complex that it may not be possible.
Mukherjee skillfully combines history, biography and science with moving stories about patients, those who have survived cancer and those who have not. He has written a fascinating book at a level accessible to the general reader as well as those with a more medical or scientific bent. He describes human conflict, failure and triumph in masterly fashion. He also describes his own personal development as a physician as he enters with his patients into the world of cancer. I highly recommend this extraordinary story of history and hope to anyone who has been touched by cancer or is curious about it. I look forward with great anticipation to an upcoming local event to celebrate the Ken Burns film inspired by this book, and to see the complete series on PBS March 30, 31 and April 1, 2015.● Leslie Kohman, MD, is medical director of the Upstate Cancer Center.
Film previews March 25 in Syracuse at the Upstate Cancer Center Get an early look at clips from the upcoming television event, “The Story of Cancer: The Emperor of All Maladies” from 6 to 8 p.m. Wednesday, March 25. The Upstate Cancer Center, in partnership with the WCNY television station, presents the free preview event. Parking is also free in the open lot on East Adams Street across from the center. Physicians and staff from the cancer center will make presentations during the event. Attendees will learn about their risk of cancer and the newest treatments available. “The Story of Cancer” is a six-hour documentary that will air on PBS stations March 30 through April 1. It is based on the book, “The Emperor of All Maladies: A Biography of Cancer,” by Siddhartha Mukherjee, MD. The film was directed by filmmaker Barak Goodman and produced by Ken Burns, who recently oversaw production of “The Roosevelts.” Learn more about the documentary at cancerfilms.org. ● winter 2015
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Patient perspectives
SUSAN KAHN
Author David Lankes, PhD, center, with his oncology nurses, from left to right, Carolyn Stafford, Heidi See, Cyndy Carr and Kevin O’Keefe.
Professor sought to be ‘boring’
Publishing a book called “The Boring Patient” was Syracuse University professor R. David Lankes’ way of summing up his experience with Hodgkin’s lymphoma, a cancer that starts in the white blood cells. He was diagnosed in 2010 after doctors first thought he had bronchitis, then transient ischemic attacks and then a seizure disorder. Lankes, a professor in SU’s School of Information Studies, underwent chemotherapy and a bone marrow transplant and writes candidly about the ordeal in 17 chapters. Doctors and nurses go unnamed as Lankes tells it like he saw it. Lankes chronicles his thoughts and feelings (often wryly) as well as his treatment details. He said he decided not to wallow in negative thoughts and to instead adopt a cheery outlook, even on days when he had to fake it. That helped. He also aimed to be the boring patient. He did not want to be an “interesting case” because that meant complications that would draw more attention and demand more treatment. He just wanted to quickly and quietly go through his treatment and have it be successful.
EXCERPT “Here is the hardest lesson I learned in chemotherapy. I was not battling cancer. The chemo was battling cancer. Battling is the wrong metaphor. I didn’t feel like I was on the front line of some war. No, I was the home front. Once the battle was endorsed, I was the one at home sacrificing to support the war effort: taking the rations and reductions as part of my duty in the fight. The chemo was storming the barricades. “The key, I came to see, in beating cancer through chemo is not fighting, but acceptance. You must accept the drugs, and you must accept that the drugs are going to progressively take from you as much, or so it seems, as the cancer. You must accept that your legs will ache and weaken; that your breathing will constrict; that your bowels will constipate; that you will lose energy. You must accept that for the drugs to do their work — the true battle — you must accept a lack of control.” —FROM “THE BORING PATIENT” BY R. DAVID LANKES
So far, the cancer has not recurred.
She chronicled her year with breast cancer Shelly Straub of Cicero, NY shares the story, and photos, of her diagnosis and treatment for breast cancer in a book she calls, “A Tale of Two Boobies: One Year with Cancer.” Her diagnosis came in October 2013, followed by a double mastectomy and reconstructive surgery, chemotherapy and radiation. “It was one year of hell,” she said. “It was difficult. It was very hard to get through. Everything in my life changed.”
Because the experience seemed so surreal, Straub wanted to write a book in order to remember her story. She included graphic photos – and a parental advisory on the book cover – in order to be instructional. Also included are her monthly calendars, which show the activities of everyday life (Thanksgiving, the start of winter) mixed with medical appointments (biopsy results, surgery for port installation.) She dedicates the book to her mother.
To hear interviews with the authors, go to upstate.edu/healthlinkonair and type their last names.
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Healing harmonies
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Music adds to the environment
Daylight and sunshine pour into the Upstate Cancer Center lobby through walls made of windows. For musicians who perform there, “it’s definitely inspiring,” says music program coordinator, Victoria Krukowski.
Visit the center weekdays between 10 a.m. and 4 p.m. — when most appointments are scheduled — and you are liable to hear music from a cello, a harp, a string quartet, a piano, or a singer. Krukowski seeks upbeat performers from a variety of genres who are willing to play music appropriate to healing — softly. Sound travels up the glass to be heard in waiting rooms above the lobby. “It’s amazing how much it adds to the environment,” she says. Krukowski, who plays the clarinet, performed with the Syracuse Symphony Orchestra for 14 years and now performs with Symphoria. As music program coordinator at the cancer center, she selects and schedules performers. She is not looking for elevator music, but she does not want anything too loud that would overwhelm the senses. Tunes that are upbeat and familiar are good choices, including Broadway favorites, ’60s and ’70s songs that appeal to lots of people, Mozart and Bach. Beatles tunes are always a hit. “People seem to like tunes that they know,” she says.
5 songs Here is a playlist Victoria Krukowski would enjoy performing at the Upstate Cancer Center: ●
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“Give Me the Simple Life” by Rube Bloom & Harry Ruby “Send in the Clowns” by Stephen Sondheim
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“Imagine” by John Lennon
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“You Are the Sunshine of My Life” by Stevie Wonder
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“The Entertainer” by Scott Joplin
Victoria Krukowski, who plays the clarinet, is the music program coordinator for the Upstate Cancer Center. One of her favorite songs to play is Claude Debussy’s “The Girl with the Flaxen Hair.”
Want to perform? Volunteers can apply to perform at the Upstate Cancer Center by contacting Matt Capogreco at capogrem@upstate.edu or 315-464-3605. Be prepared to share a video or audio clip that demonstrates the type of music you wish to perform.
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Pianist Sydney Fina, 14, and the North Syracuse Junior High School performed at the Upstate Cancer Center in December. PHOTOS BY SUSAN KAHN
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Gingerbread with Brown Sugar Meringue This recipe is designed to comfort people with nausea, diarrhea and/or mouth sores.
Ingredients For gingerbread:
For meringue:
2 1/3 cup all-purpose flour
1 teaspoon baking soda
2 egg whites
½ cup butter or margarine
1 teaspoon ground ginger
¼ teaspoon cream of tartar
1/3 cup sugar
1 teaspoon ground cinnamon
½ cup packed brown sugar
1 cup molasses
¾ teaspoon salt
¾ cup hot water
1 egg
Preparation o
Heat oven to 325 F. Grease bottom and sides of 9-inch springform pan or 9-inch square pan with shortening; lightly flour. In large bowl, beat gingerbread ingredients with electric mixer on low speed 30 seconds, scraping bowl constantly. Beat on medium speed 3 minutes, scraping bowl occasionally. Pour into pan. Bake about 50 minutes or until toothpick inserted in center comes out clean.
Nutritional information, per serving: 410 calories 11 grams total fat 50 milligrams cholesterol 450 milligrams sodium
Meanwhile, in medium bowl, beat egg whites and cream of tartar with electric mixer on high speed until foamy. Beat in brown sugar, 1 tablespoon at a time. Continue beating until stiff peaks form and mixture is glossy. Do not underbeat.
640 milligrams potassium
Increase oven temperature to 400o F. Spread meringue over hot gingerbread. Bake 8 to 10 minutes longer or until meringue is light brown. Serve warm. Store covered in refrigerator.
5 grams protein
73 grams carbohydrates 1 gram dietary fiber
If you want to skip the meringue, consider serving this gingerbread with applesauce. This recipe makes nine servings and is high in iron, magnesium and potassium and low in fiber. THIS RECIPE IS FROM THE BETTY CROCKER LIVING WITH CANCER COOKBOOK BY GYNECOLOGIC ONCOLOGISTS KRIS GHOSH, MD, AND LINDA CARSON, MD.
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PHOTO BY SUSAN KAHN
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Facts about four
ADVICE FROM EXPERTS
gynecologic cancers
Although all involve organs of the female genital tract, each of these four gynecologic cancers has unique symptoms and treatments, says Rinki Agarwal, MD, an Upstate gynecologic oncologist who adds that an early assessment by a gynecologic oncologist is likely to improve outcomes.
Cervical
Uterine
Cancer of the cervix is usually diagnosed in midlife. Most women with cervical cancer are infected with HPV (human papilloma virus). A vaccine, now available for girls and boys, has good efficacy and proven safety.
Also called endometrial cancer, this affects the lining of the uterus. It is diagnosed through a tissue biopsy and/or imaging studies. Symptoms
Symptoms Cervical cancers may have no symptoms and may be detected by routine gynecological exams, especially at early stages. Symptoms may include abnormal vaginal bleeding, unusual vaginal discharge or pain during intercourse. Treatment Regular pelvic exams can uncover pre-cancerous conditions. Surgery, radiation and/or chemotherapy are options for treatment. Surgery is less effective in later stages.
PHOTO BY SUSAN KAHN This cancer is almost always caught early, because the early symptoms — irregular/ heavy vaginal bleeding or discharge and pelvic pain — send women to their gynecologists.
Treatment Surgery is the main treatment, but a variety of radiation therapies and chemotherapies are also options for treatment. Hormones may also be prescribed.
Vulvar
Ovarian cancer is considered a silent disease as the symptoms are usually subtle. It does not have good screening tests available and is frequently diagnosed at an advanced stage.
Most cancers of the vulva are squamous cell carcinomas, which is a skin cancer, and this disease is more commonly seen in an older population. A vulvar cancer may also be related to an infection with the human papilloma virus. The HPV vaccine may provide protection against vulvar cancer.
Symptoms
Symptoms
Bloating, pelvic or abdominal pain, trouble eating or feeling full quickly and feeling the need to urinate urgently or often can be symptoms of ovarian cancer – along with fatigue, pain during intercourse, upset stomach or heartburn, constipation, back pain and menstrual changes. Because early detection can dramatically improve survival rates, seek medical care for these symptoms if they persist daily for more than a couple weeks.
Itching, pain or burning, thickening of the skin or an open sore on the vulva that lasts for a month or more could signal vulvar cancer. Also be concerned if an area on the vulva looks different from normal — lighter or darker, red or pink. Wart-like bumps may be suspicious, too.
Ovarian
Treatment If caught early, ovarian cancer responds well to treatment, which usually includes a combination of surgery and chemotherapy.
Treatment Pre-cancerous conditions are likely to be discovered during regular pelvic exams. If cancer is diagnosed, patients and doctors may choose surgery, radiation and/or chemotherapy, depending on the stage of the cancer. ● Need help finding a gynecologist? Contact Upstate Connect at 1-800-464-8668.
Listen to an interview on this subject at upstate.edu/healthlinkonair by searching for “Agarwal.”
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Q:
ADVICE FROM EXPERTS
A:
How can I get my mind off my diagnosis long enough to get a good night’s rest?
“Most people who are depressed or anxious are troubled about a past that we cannot go back to change or a future that may not even come to fruition. In that process, we miss out on living the present moment. When you are worrying about your diagnosis, that worry is about a future that may or may not be. So to calm your mind, here are several techniques you can use. “The first is to practice deep breathing. When you go to bed, lay down comfortably. Then take a slow deep breath in through your nose. As you do, expand your stomach like a balloon. Then breathe out slowly through your mouth, deflating that balloon. Some people like to chant ‘aum’ when breathing out. Others may have something else that they focus on. The point is to focus on the breath. When your mind starts to wander, just come back to focus on your breath and continue breathing. You can do it for 5 to 10 minutes or longer if you wish. This will help to calm your mind. “Another technique is to write all the stresses in your life at the present moment on a piece of paper. Then on a separate piece of paper, make two columns. One column can be labeled “Things I can do something about,” and the other can be labeled, “Things I cannot control.” Take all of your stresses and sort them into the two columns.
“The things you can do something about become your list of action items. Take one item at a time, and make a plan to complete it. Once done, use a marker to cross it off your list. As you see this list shrinking, you know you are actively living and taking care of the stresses in your life. “The other side of the page is filled with things that you can’t directly control. Whenever your mind goes to that side, bring it back to your action item list and pick a stressor to resolve. “None of us are guaranteed tomorrow. The life we live is lived today. However, when told you have cancer, suddenly this label threatens the plans you may have made and makes us more concerned about things that we feel are unfinished, or regret words that have been spoken or not said. “You don’t need to receive a diagnosis to start closing those loops. The time is now, and you are the answer. Create contentment and peace in your life each day, and start being more selfish. Selfish is good when it is self-care, self-love, and self-respect.” ● Kaushal Nanavati, MD, is medical director of integrative therapy at Upstate.
6 ways to avoid nausea
Good nutrition is an important component of cancer care, helping patients maintain strength and weight so they can better handle their treatments. Chemotherapy and radiation therapy may cause unpleasant side effects for some patients. Maria Erdman, a registered dietitian/nutritionist at the Upstate Cancer Center, shares advice for dealing with nausea and vomiting. Erdman recommends: ●
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eating frequent, small portions every few hours throughout the day. avoiding foods or restaurants with strong or unpleasant odors. eating foods that are not greasy, fried, or very spicy.
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drinking only sips of fluids as necessary throughout your meal. for an especially queasy stomach, eat dry crackers or toast to help it settle before eating other foods. take all prescribed anti-nausea medicines as prescribed.
All of these recommendations are generalized. Find what works for you. ●
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www.upstate.edu/cancer
14 questions to ask about clinical trials The National Cancer Institute says the answers to these questions can help you decide whether to participate in a clinical trial. A clinical trial is a research study that examines whether a drug (or other treatment or device) is safe and effective in humans. Ask your health care provider: ●
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Why is this trial being done? Why do the doctors who designed the trial believe that the treatments being studied may be better than the standard treatment? Why may it not be better?
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What are the possible benefits?
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How will we know if the treatment is working?
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Will I have to pay for any of the treatments or tests?
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What costs will my health insurance cover?
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How could the trial affect my daily life?
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How often will I have to come to the hospital or clinic?
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Will I have to travel long distances to take part? What are my other treatment choices?
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How long will I be in the trial?
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What kinds of tests and treatments are involved?
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What are the possible side effects or risks of the new treatment?
ADVICE FROM EXPERTS
How does the treatment I would receive in this trial compare with the other treatment choices?
Are you at risk for oral cancer? ●
Most of the people with oral cancers whom Terrence Thines cares for are in their fifth or sixth decades of life. But lately, the oral surgeon from Upstate’s division of dentistry is seeing younger patients with the same type of disease.
Many are infected with the human papilloma virus, or HPV. Infection with certain types of HPV, easily spread from one person to another during skin-to-skin contact, can cause some forms of cancer. Thines said research so far has not connected the increase in oral cancers directly to HPV, but some experts believe the rise is related to an increase in oral sex. Tobacco and alcohol use are among the strongest risk factors for oral and oropharyngeal cancers. Smokers are many times more likely than nonsmokers to develop these cancers, says the American Cancer Society, which adds that seven out of 10 patients with oral cancer are heavy drinkers. Combining the two vices ups the risk even more. “According to some studies, the risk of these cancers in heavy drinkers and smokers may be as much as 100 times more than the risk of these cancers in people who don’t smoke or drink,” the society says. Thines said oropharyngeal cancers – cancers from the lips to the back of the throat – represent up to 4 percent of all cancer diagnoses. The death rate from oral cancer is on the decline, probably due to better diagnosis and better prevention strategies. “You have a good prognosis if the cancer is detected and treated early,” he said. Depending on the location and type of cancer cells, surgery is likely to be the first step in treatment. That may be followed by radiation and/or chemotherapy. Surgery may be disfiguring. “That’s one of the reasons we promote early detection,” Thines said, explaining that the earlier oral cancers are detected, the smaller they are likely to be and the less tissue that has to be removed. ●
PROTECT YOURSELF Oral cancer frequently begins as a painless lesion in your mouth. Therefore, experts recommend you carefully examine your mouth on a regular basis for red or white spots, lumps or anything that looks abnormal. Stand in front of a mirror. Using gauze for grip, lift your tongue so you can see beneath and in back of your mouth. Pull your cheeks away from your teeth to get a good look. See your dentist or doctor if you find something unusual. “If it’s affecting your life, and it lasts longer than two weeks, then it requires professional evaluation,” advises oral surgeon Terrence Thines, DDS, a professor in Upstate University Hospital’s division of dentistry.
Listen to an interview on this subject at upstate.edu/healthlinkonair by searching “Thines.”
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SEARCHING FOR CURES
Chemotherapy – or not?
For older patients with advanced lung cancer, the answer is not simple Which drugs?
Treatment for lung cancer can include surgery, radiation and/or chemotherapy, and what works for one patient may not be so successful in another. That’s particularly true among older patients.
A monoclonal antibody called bevacizumab is commonly prescribed because doctors believe it can add a couple of months to the lifespan of patients with metastatic lung cancer. But after focusing on patients age 70 and older in four unrelated studies, Gajra says the drug’s benefits are not so clear and may not add to survival.
“Care for older patients is much more complex,” says Ajeet Gajra, MD, a medical oncologist and cancer researcher at Upstate. People age 70 and older are likely to have additional medical problems and may be taking medication. They may have cognitive deficits, undiagnosed psychological issues and/or inadequate social support. “Most important perhaps, they have limitations in physical function. They experience more side effects from treatments. We cannot treat them in the same way that we treat younger patients.”
SUSAN KAHN
Non small cell lung cancer is a leading cause of cancer-related death in the United States. Almost half (47 percent) of patients with lung cancer are age 70 or older. While the incidence of and death rate from lung cancer have improved in people age 50 and younger, that is not the case for those age 70 and older, says Ajeet Gajra, MD, above, who reviewed treatment options for the Journal of Clinical Oncology.
Gajra was asked by the Journal of Clinical Oncology to outline the treatment options for lung cancer in older patients to keep physicians informed. His work was published last year. Is chemotherapy worthwhile?
Gajra cited studies that show chemotherapy can add several weeks to the lives of patients over age 70 with advanced lung cancer. However, side effects of many of the medications used to treat cancer may be more severe in older patients. Some older patients may prefer to preserve quality of life over prolonging life, he points out. One drug or two?
Doctors may prescribe chemotherapy that includes a single medication or a combination. Gajra found research showing the benefits of both treatments. He opposes a blanket recommendation for all older patients. “The elderly are heterogeneous: some are functional, some are not; some have excellent organ function, others do not,” he writes.
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Erlotinib — which slows the growth of cancer cells — can lengthen survival in older patients, but with more severe side effects. Patients over age 65 reported more rashes, fatigue and dehydration than younger patients. “A prescription for erlotinib should be preceded by a realistic discussion of adverse effects,” Gajra advises. What about after surgery?
Patients who have surgery may receive chemotherapy afterward. Which drug, how much and for how long have to be considered for each individual patient.
Chemotherapy containing the drug cisplatin works for relatively healthy older adults, but its benefit has not been shown in patients age 80 and older “and should be undertaken with extra caution,” Gajra writes. He also notes that chemotherapy containing the drug carboplatin may provide modest benefit to some patients. What about during radiation?
Some doctors prescribe chemotherapy to be taken while a patient undergoes radiation therapy for cancer that is still confined to the chest. While some studies have shown no improvement in survival or quality of life by adding chemotherapy to radiation, others have shown improved outcomes, but with significant side effects. Gajra says some older patients may benefit from chemotherapy with radiation, but he urges doctors to use caution with this type of therapy – and consider the patient’s overall health and nutritional state. ●
www.upstate.edu/cancer
SEARCHING FOR CURES
Fruit fly ovaries are made up of subunits called germanium, which house germline stem cells, as shown in green above. Germline cells are the sex cells that pass along genes to the next generation.
Upstate researcher focuses on what a protein can teach about cancer
An Upstate scientist who conducts research in fruit flies is hopeful that her work will help our understanding of cancer and other diseases. Fruit flies are often used in research because their genome is similar to that of humans.
Francesca Pignoni, PhD, recently received a $161,000 grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development to support her research. She is an associate professor of ophthalmology, biochemistry and molecular biology; and neuroscience and physiology. She is studying the function of a protein that was discovered in her laboratory at Upstate. The protein allows fruit flies to keep stem cells within its ovary where they divide to ensure the passage of genetic material to the next generation through reproduction. Cancer is one disease that can be explored through this research. Pignoni says that the protein appears to play an important role in a type of molecular communication known as BMP signaling. BMP signaling is a major regulator of a cell's fate — including its ability to grow and multiply and to form more specialized cells. The BMP molecule is the same in the fruit fly as in the human, where it has been linked to colon cancer, breast cancer, lung cancer and some diseases of the bone. When the newly discovered protein is added in excess, the stem cells develop into tumors. Learning more about how the protein works at a cellular level can lead to a better understanding of how BMP dysfunction causes cancer.
“We clearly show in the flies that the level of this protein needs to be regulated in order for the stem cells to be under control,” said Darin Dolezal, an MD/PhD student assigned to Pignoni’s lab. “The proliferation of stem cells has to do with the growth of cancers. What we don’t know is whether this protein does, as well.”
Dolezal admits that as a boy growing up on Long Island, then attending Cornell University and aiming for a career in the medical sciences, he never imagined he would study ovaries in fruit flies. It’s not because he is interested in insect biology. Rather, he wants to help determine if this protein can lead to a better way to diagnose or treat cancer. “There are things that we can learn in the fruit fly ovary that can translate into human clinical medicine. If we figure it out in flies we can then move into more complex organisms and try to understand it there,” said Dolezal. Pignoni said she wants to understand if the protein helps cells receive or interpret only the BMP signal, or if it is part of a more general biologic process that impacts multiple signaling systems. “In the latter case, its dysfunction would profoundly affect the ability of cells to communicate with each other,” she said. Either way, determining how the protein works at a cellular level could help explain how dysfunction of BMP, and perhaps other signaling pathways, causes cancer and other human disorders. ●
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After receiving her final chemotherapy treatment in October, Sadie Wilson, 4, was escorted to her port removal surgery by her doctor, Karol Kerr, MD. Sadie was diagnosed at 22 months of age with acute lymphoblastic leukemia and was cared for at the Upstate Golisano Children’s Hospital and Upstate Cancer Center. Today, she is a healthy pre-kindergartner in her family’s hometown of Oswego, NY. She is the twin sister of Layla and daughter of Michael and Meghan Wilson, who took this photo.