care
CAN
ER
for anyone touched by cancer SUMMER 2015
What your doctor wants you to know about second opinions page 6 Why I had my ovaries removed page 8
How a tumor is diagnosed page 9
Choosing the right sunscreen page 11
Food that soothes mouth sores page 15
Brought to you by the
A new perspective page 4
your guide
What to expect at your first visit
Halkin/Mason PHotograPHy, llC
The first appointment at the Upstate Cancer Center (pictured above) is usually a consultation that lasts at least 1½ hours and involves the oncologist and other members of the treatment team who will discuss options and recommendations with the patient. Oncologists will have reviewed radiology and laboratory results and other information from referring physicians prior to the patient’s arrival. Before arriving: • Do some research on the type of cancer you have. Find resources at www.upstate.edu/cancer under the “cancer types” tab.
What to bring:
• Completed medical history form, located at www.upstate.edu/cancer under “your first visit.” • Referring physician’s name, address and phone number. • List of prescription medications, over-the-counter medicines and supplements. • List of questions. • Family member or friend who can help listen and take notes. • Health insurance cards, plus your employer’s name, address and phone number if you are covered under an employer’s insurance program. Also, living will or advance directives, if you have them.
• Write down specific questions. • Learn about your physician at www.upstate.edu/hospital/providers • Let the appointment scheduling staff know if translation services or interpretation for the hearing impaired are needed.
• Parking ticket for validation. For questions, please call 315-464-HOPE (4673).
Patients come from miles around
More than a quarter of patients who receive at least part of their first course of cancer treatment at Upstate Medical University travel from 25 to 49 miles to get to Upstate. Almost a quarter travel 50 miles or more. About 17 percent live just five or fewer miles from Upstate.
Patients travel:
•
se, NY Syracu
0 to 4 miles (17%)
2
5 to 9 miles (13%)
CANCER CARE
10 to 24 miles (17%)
summer 2015
25 to 29 miles (28%)
50 to 99 miles (20%)
100 or more miles (4%)
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inside
4
5
Inside this issue CARING FOR PATIENTS What to expect at your first visit
page 2
Hodgkin lymphoma changed her body and mind
page 4
A medicine that stimulates the immune system
page 5
Everything you need to know about second opinions
page 6
Why I had my ovaries removed
page 8
How a tumor is diagnosed
page 9
A look at the Comfort Cart
back cover
ADVICE FROM EXPERTS
13
8
19
SEARCHING FOR CURES A gene that’s linked to prostate cancer
page 13
DNA details may reveal where cancer begins
page 14
Keeping connected with the siblings
page 15
Food that soothes mouth sores
page 15
Why exercise is important during treatment
page 16
LIVING WITH CANCER
MAKING A DIFFERENCE
Why e-cigarettes are a bad idea
page 10
Meet the man who raised $5,000 recycling cans and bottles
page 18
Understanding melanoma
page 11
Going bald for a cause
page 19
How to choose the right sunscreen
page 11
What to consider before taking a medication
page 12
On the cover: High school student and cancer patient Emily Breclaw at swim practice. PHoto by susan kaHn
care
CAN
ER
for anyone touched by cancer
SUMMER 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 WRITERS DESIGNER
Leah Caldwell, Jim Howe, Susan Keeter, Amber Smith 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.
UPSTATE CANCER CENTER MEDICAL DIRECTOR Leslie J. Kohman, MD
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 E. Adams St., Syracuse, NY 13210. 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.
ASSOCIATE ADMINISTRATOR Richard J. Kilburg, MBA
summer 2015
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Caring for Patients
A new perspective
Hodgkin lymphoma changed her body and her mind
Emily Breclaw took some time off during her cancer treatment but returned to swimming with the Liverpool Jets during her second round of treatment. PHoto by susan kaHn
Emily Breclaw underwent four rounds of chemotherapy, each lasting a couple weeks. She dealt with three days of nausea, and soon after that subsided, she had whole-body muscle aches with which to contend, but she said “I felt better going through chemo than I did for the eight months before.” Breclaw, 16, a sophomore at East Syracuse Minoa High School and a competitive swimmer, was sick for almost a year. She would get tired. She had low-grade fevers every night for five months, and night sweats. She would get out of breath. A blood test revealed anemia; iron supplements did not help. Breclaw struggled to concentrate and sometimes fell asleep in class. “I would have to do my homework standing up because otherwise I would fall asleep,” she recalled. Over the summer, she developed stomachaches and pain in her ribs. She also dealt with itchiness, and her trouble breathing got worse. Her family doctor ordered a chest Xray and located a mass the size of an orange. He sent Breclaw to Upstate Golisano Children’s Hospital, where pediatric oncologist Gloria Kennedy, MD began caring for her. She was admitted to the hospital that Friday, Oct. 24. She had a biopsy the next day. When Breclaw learned she had cancer, she was not surprised. “I kind of knew it was coming,” she said. “You know how some people say they kind of knew? Something in me just knew.” The next week was full of medical appointments to prepare Breclaw and her parents for the chemotherapy that began Nov. 4. She was found to have Hodgkin lymphoma, a
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Symptoms An enlarged lymph node is the most common symptom of Hodgkin lymphoma, often appearing as a lump or bump on the side of the neck, in the armpit or groin. Other symptoms may include fevers that come and go, drenching night sweats, unexplained weight loss, exhaustion, itchiness and loss of appetite. Source: American Cancer Society
cancer that begins in the white blood cells. The American Cancer Society says Hodgkin lymphoma accounts for about 3 percent of childhood cancers. Breclaw missed a lot of school and a lot of swimming. She returned to classes in January, having lost her hair during treatment. “I went back with a hat, and people were OK with it. They didn’t care at all that I didn’t have any hair,” she said. “A few weeks after that, I started getting a little hair. I didn’t wear a hat, and everybody was OK with that, too.” She returned to school with a more mature way of thinking. Before cancer, she was shy, prone to worry about what people thought of her and quick to complain about trivial matters. Now, as a cancer survivor, Breclaw has confidence. Little things that used to concern her are unimportant. And, she has a perspective that causes her to think before complaining. “I stop and think about the struggles I endured and the struggles that some children are still enduring.” ●
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Caring for Patients
Newly approved drug boosts pediatric cancer BY AMBER SMITH
When Jessica Brickman of Camillus put her baby, Jack, to sleep that Friday last fall, the 9-month-old was just as jolly and happy as always. The little guy awoke with black circles around his eyes, clearly not feeling well, and throwing up. Emergency pediatricians at the Upstate Golisano Children’s Hospital explored whether Jack had fallen or been injured. A computerized tomography scan revealed tumors on his skull, and one of the doctors prepared Brickman and Jack’s father, Robert Donnelly, for the news they would hear later that day.
Pediatric oncologist Irene Cherrick MD PHoto by Cindy bell
Jack had an advanced form of neuroblastoma, the most common cancer in infancy, which affects about 700 babies in the United States each year. Pediatric oncologists at Upstate cared for 15 children with the diagnosis between January 2010 and February 2015. Jack’s tumors were classified as high risk, unusual for an infant under 18 months of age. It would require aggressive treatment in order to improve his chance for a cure. Babies with low-risk tumors have higher cure rates. Treatment started the next day for Jack. He was hospitalized for 10 days, receiving the first of six rounds of chemotherapy. He went home on his big sister, Alyssa’s second birthday. After additional chemotherapy, Jack had stem cells removed and frozen to be returned to his body later. He underwent surgery to remove his tumors. Then his parents took him to Philadelphia for three weeks for specialized radiation therapy before returning to Upstate for the stem cell transplant. Beginning the week of Memorial Day, Jack started immunotherapy. The toddler, now 18 months old, receives a continuous infusion of a drug called Unituxin, which will help his body’s immune system find and destroy any remaining cancer cells. The infusions last from 10 to 20 hours over four consecutive days, and they are painful. But Unituxin has become part of the standard treatment for neuroblastoma since researchers showed that children with high-risk tumors who received the drug had survival rates of 66 percent, compared with rates of 46 percent among those who did not. As soon as researchers realized how effective the drug was, the international trial involving 1,200 children was halted, and all of the children received Unituxin.
Jack is being treated with a newly approved medication that has shown to boost survival rates by 50 percent. This medication — Unituxin — was available to Upstate pediatric patients during the clinical trial phase. PHoto Courtesy tHe briCkMan-donnelly faMily
“Unituxin basically increased the cure rate by 50 percent. That’s huge,” said Upstate’s Irene Cherrick, MD, one of the pediatric oncologists who celebrated the approval of the drug in March. It’s only the third drug approved by the FDA specifically for the treatment of cancer in children. The medication has been available to patients at Upstate Golisano Children’s Hospital through the clinical trial. As revolutionary as the drug is, it does not replace the treatment regimen for neuroblastoma – and it does not cure everyone. Jack’s parents remain hopeful. “If it works the way it’s supposed to,” Brickman said, “it will make him better in the long run.” ●
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Caring for Patients
A variety of doctors at Upstate care for patients who are diagnosed with cancer. We tapped some of them to share insights on second opinions. Here’s what they had to say: You don’t need my permission to get a second 1 opinion. And, don’t worry that you are betraying me or hurting my feelings by asking for one. “I don’t know one physician who would take this personally,” said Srinivas Vourganti, MD, a urologist at Upstate Medical University who advised firing any doctor who did not support a patient who did so. can probably suggest two or three doctors you 2 Imight want to see for a second opinion, and my office staff might even be able to help schedule that appointment.
3
One of my partners can render a helpful second opinion. Just because we work together does not mean we think alike. It may make sense to seek an opinion from a doctor
4 who is not in the same specialty. An orthopedic
surgeon may say you need surgery, for instance, while a rheumatologist may recommend physical therapy.
5
Second opinions should be automatic in situations where a doctor proposes an experimental procedure or a treatment that is unproven.
Check with your health insurer about coverage, 6 because I have seen policies that won’t pay for second opinions at out-of-state facilities. Also, be prepared for the costs involved in traveling out of the area, since those are usually not reimbursed. If what you really want is a different perspective, see
7 a doctor from a different region of the country,
where medical practice styles are likely to differ. Some institutions facilitate electronic second opinions so that patients don’t have to travel. As your doctor, part of my job is to help you digest 8 the information you find through your own research and decide whether a second opinion makes sense. “People come armed with a lot of information – not all of it good or pertinent,” said Robert Dunton, MD, chief of cardio-thoracic surgery at Upstate University Hospital. “I will tell you if I think you’re making a bad decision, but,” Dunton said, “if a patient picks an inferior choice knowing their options, that’s their prerogative.” We’re in this together. If your gut is telling you to
9 see what another doctor thinks, you are not going to feel right until you do. You may not think you need a second opinion, but I
20 things your doctor
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10 may want you to get one. Perhaps you need surgery and there are different ways to do the operation. Another surgeon’s input could help determine the best approach for your case.
wants you to know w w w. u p s t a t e . e d u / c a n c e r
Caring for Patients
though they are not in your possession, every 11 Even note and every slide that pertains to your care belongs to you. If you want biopsy tissue to be reviewed, for instance, you can grant permission for it to be released. Just realize that gathering all of your records, particularly if you have seen multiple physicians, is likely to require a lot of your time. If you face cancer, enlisting an oncologist may be
12 more important than only obtaining a second
opinion. An oncologist can help you manage your disease and your decisions. You’d be surprised how many people who receive a cancer diagnosis go straight to surgery or another treatment without considering the impact. “They get a procedure view, but they don’t get a life view. It’s not cancer management,” said Ajeet Gajra, a medical oncologist at the Upstate Cancer Center. There are instances where you may want a third opinion or tie-breaker. Consider the diagnosis of pectus excavatum, the abnormal development of the rib cage in which the breastbone caves inward. One doctor may recommend no intervention. Another may favor an elaborate insertion of metal bars into the chest. Additional input may help you make a decision.
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If your second opinion differs considerably from the first, “it’s time to have an honest discussion with your provider,” said Gajra. “People need to understand there can be more than one valid approach.”
not need a second opinion. Many patients 16 atYouthemayUpstate Cancer Center, particularly those with complex cancers, have their cases presented at a weekly multidisciplinary conference. This is where a variety of cancer and medical specialists discuss your situation and reach a consensus on your best options — so you essentially receive multiple professional opinions. This style of multidisciplinary care is becoming the gold standard. If I’m the doctor providing a second opinion, I’ll do 17 my best to give an unbiased opinion, regardless of whether I agree with the first doctor. If he or she has made mistakes, I’ll find a professional way to let you know. I really do care what’s best for you. I’ll tell you if
18 your condition warrants treatment elsewhere.
Some rare conditions are best treated by highly specialized physicians. I do not want to dampen your hopes, but I will be
19 straight with you. You are probably hoping that
another doctor will be able to tell you that you don’t have cancer, or that it is not so advanced, or that he or she has a miracle cure. That almost never happens. Most of the time after a patient gets a second
20 opinion, there is no change in his or her treatment plan. However, they feel as if they are better educated – and that’s a good thing. ●
I would not want to lose you as a patient, but if you 15 prefer the second doctor, I would tell you to get care where you feel most comfortable.
about second opinions summer 2015
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A defensive move
Caring for Patients
Removing the ovaries before cancer develops BY SUSAN KEETER
The day my mother spiked a fever, we had no idea it was a symptom of ovarian cancer and that we would lose her just seven weeks later. Looking back, the only other possible symptom had been several months of unexplained bouts of nausea. During the sad time of adjusting to the death of my mother, I began to worry about my own health. Five years before, my mammogram caught early stage breast cancer, and treatment left me virtually 100 percent cured. Was there a similar test for ovarian cancer that I didn’t know about? When I asked my oncologist, he said, “I think you’re a good candidate for ovary removal, and if you choose to have the surgery, make sure they remove your Fallopian tubes as well. That cancer can show up in the tubes, as well.” He referred me to Rinki Agarwal, MD, the gynecological oncologist who had been part of my mother’s cancer care team. She explained that the current tests for ovarian cancer are no better than a coin toss. “There are ultrasounds and blood tests for ovarian cancer, but they have only 60 percent accuracy,” she told me. “This cancer tends to develop on the surface of the ovaries, and we can’t see it.” Each year in New York State, about 1,500 women — including 40 in Onondaga County — are diagnosed with ovarian cancer. About two-thirds die from the disease, according to statistics from the New York State Department of Health. Those at highest risk for the disease can reduce their chances of developing it by having their ovaries and Fallopian tubes surgically removed. My family history made me a candidate for the surgery. Breast cancer affected both my maternal and paternal aunts, one of whom was diagnosed young and died of the disease. WHO GETS OVARIAN CANCER? Women in their 50s are at the greatest risk for ovarian cancer, but the overall risk falls on women between the ages of 30 and 60. The ovaries are the two almond-shaped organs on each side of the uterus. OVARIAN CANCER SYMPTOMS l
Bloating
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Pelvic or abdominal pain
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Trouble eating or feeling full quickly
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Feeling the need to urinate urgently or often
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Fatigue, pain during sex, upset stomach or heartburn, constipation, back pain and menstrual changes can also be symptoms
They may be vague, but if these symptoms exist daily for two to three weeks, a woman should seek gynecological care. Women of all ages are at risk, especially those with a family history of breast, colon or ovarian cancer. Early detection dramatically increases survival rates.
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Rinki Agarwal, MD, performs a laparoscopic oophorectomy (ovary removal) and salpingectomy (Fallopian tube removal) on the author. PHoto by susan kaHn
My maternal great-grandmother had ovarian cancer, like my mother. And, I had an early stage breast cancer known as DCIS, ductal carcinoma in situ. Our next step was to weigh the benefits of surgery against the possible health costs. Agarwal explained that removing the ovaries means losing the estrogen and progesterone they produce, which increases the risk of osteoporosis, heart disease and dementia for women under age 60. That was sobering. However, since the ovaries gradually decrease hormone production and secretion, within about five years of menopause, these risks are no longer increased by ovary removal. At the age of 56, my risk of ovarian cancer is in front of me, counseled Agarwal, with any benefit from ovary-produced hormones likely behind. She scheduled a couple of tests, and almost 10 months after my mother’s death, Agarwal operated laparoscopically, through three tiny incisions in my abdomen. Some patients have lengthy recovery and significant pain, but I was fortunate. I had the surgery in the morning; that evening, I watched my daughter’s dance rehearsal. ●
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How a tumor is diagnosed
As serious as it is, cancer is usually not an emergency, urologic oncologist Srinivas Vourganti, MD, told visitors to the Upstate Cancer Center in April.
A cancer diagnosis is a step-by-step process that has to be complete before exploring treatment options. If you rush to judgment with incomplete information, you may face unnecessary treatments or therapies that don’t jibe with your beliefs. Vourganti said to think of a suspicious lump as a dog barking in your backyard. The bark could belong to a variety of dogs, from a toy poodle wearing a collar to a rottweiler
Caring for Patients
foaming at the mouth or something else entirely. You won’t know for sure until you do some research.
Depending on the type of cancer suspected, that research will include a series of medical tests. If cancer is found, doctors work with laboratory specialists on TNM staging. This takes into account the tumor size (T), whether cancer has spread to the lymph nodes (N) and whether it has spread elsewhere, or metastasized, (M). They TNM staging and other factors to help create an individual treatment plan. ●
CARE FOR SENIORS
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GEMCARE
SerViceS iNclude: • geriatric & memory assessments • Physical & medication review • Primary care for frail elders
Need emergeNcy Or urgeNt cAre? Visit gem care, the only emergency room designed for seniors age 65+.
upstate Specialty Services, 550 Harrison St., Syracuse
upstate university Hospital, community campus 4900 Broad rd., Syracuse
Patients, doctors or family members may request appointments: 315.464.5166
(the former community general Hospital)
call upstate connect: 800.464.8668
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Electronic cigarette use soars among teen smokers
adviCe froM exPerts
The use of electronic cigarettes by teens is soaring, causing concern among health experts who question the safety of the battery-powered devices and complain that they are creating a new generation of nicotine addicts.
E-cigarettes create an inhalable vapor by heating liquid nicotine – in flavors such as candy or fruit – in a disposable cartridge or refillable tank. The vapor lacks the tar of traditional cigarette smoke but still contains cancer-causing chemicals, said Leslie Kohman, MD, a lung surgeon and medical director of the Upstate Cancer Center. While the U.S. Food and Drug Administration has declared the main component of e-cigarettes, propylene glycol, safe for eating, she said, “Inhaling it is very different because the lungs absorb things in a very different way than the intestinal tract.” Kohman is concerned about the lack of regulation, too. “E-cigarettes are manufactured in various locations around the world with no manufacturing controls, no safety controls whatsoever,” she said. The FDA has proposed regulations, and a group of health organizations in New York state is trying to add e-cigarettes to the state’s Clean Indoor Air Act, so the devices would be prohibited anywhere cigarettes are prohibited. Also, since an 18-month-old boy from the Albany area died after swallowing a small amount of liquid nicotine, New York state now requires childproof packaging of liquid nicotine. The sale of tobacco products, including e-cigarettes and liquid nicotine, to those younger than 18 years of age is illegal in New York state. Some local jurisdictions have set the age higher: In Onondaga County, where Upstate Medical University is located, the minimum age is 19. In New York City, it’s 21. Data from the U.S. Centers for Disease Control and Prevention tracks smoking rates among high school and middle school students, revealing underage tobacco use. Experts fear that three of every four teen smokers will continue into adulthood because almost 90 percent of adult smokers say they first tried cigarettes as teens. ● Hear an interview at www.upstate.edu/healthlinkonair by searching “cigarettes.”
Tobacco use among teens
15%
2011 ●
2013
2014 ●
10% 5% ●●
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●
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0% While traditional cigarette smoking declines among U.S. high school students, and stays the same among middle schoolers, the increasing use of electronic cigarettes and water pipes called hookahs means that tobacco use among teens remains steady.
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●●
e-cigarette use: high school e-cigarette use: middle school
hookah use: high school hookah use: middle school
● ●● cigarette use: high school cigarette use: middle school
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Tips for understanding melanoma
adviCe froM exPerts
Melanoma is one of the most aggressive forms of skin cancer and the leading cause of death from skin disease, killing an estimated 10,000 people in the United States each year. Melanomas often resemble moles; some develop from moles. If melanoma is recognized and treated early, it is almost always curable, but if it is not, the cancer can advance and spread to other parts of the body, where it becomes hard to treat and can be fatal. Here are some things to keep in mind about melanoma from Scott Albert, MD, a surgical oncologist at Upstate Medical University. Keep track of changes to your skin, he said, mentioning the Among melanoma’s risk factors: “ABCDE” guidelines commonly used to check for warning l Having fair skin, although dark-skinned people can also signs of possible melanoma: get melanoma. A (asymmetry): One half of a mole or birthmark does not l A family history of melanoma. match the other. l Exposure to ultraviolet (UV) light, such as sunlight or B (border): The edges of a mole are irregular, ragged or tanning lights. blurred. “Fair-skinned patients are predisposed to sunburns,” Albert c (color): The color is not the same all over. said, “and sunburns, especially blistering sunburns, put you d (diameter): The spot is larger than ¼ inch across – about at increased risk,” even years later. the width of a standard pencil eraser. “Evidence is becoming stronger that tanning beds do have a e (evolving): The mole is changing in size, shape or color. negative influence on people and increase their risk of skin cancer,” Albert said, but the melanoma might occur 10 or Some melanomas do not fit these guidelines, but it’s 20 years later, and it can be hard for people to see the causeimportant to tell your doctor about any skin changes, and-effect relationship. ● growths that look different from your other moles, and spots that itch or bleed, he said.
How to choose the right sunscreen
You can buy sunscreens with SPFs higher than 30, but you don’t need a higher sun protection factor to protect your skin from the sun and ultraviolet radiation, according to Ramsay Farah, MD, the division chief of dermatology at Upstate. He offers this advice for reducing your risk of skin cancer as well as sunburn: l l l
l
Apply sunscreen a half hour before you go out in the sun.
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Reapply sunscreen frequently — every two to three hours when you’re in the direct sun. Make sure the label says the sunscreen shields against both UVA and UVB rays. Sunscreens are traditionally weaker at getting UVA radiation. There’s no such thing as a truly waterproof sunscreen, so after you get out of the water, you need to reapply your sunscreen.
l
Sunscreens are essentially the same for children and adults, although some are marketed for kids. For children younger than 6 months of age, however, it’s probably better to dress them in protective clothing than to use sunscreen. Zinc oxide and titanium dioxide are good sunscreen ingredients because they physically block the sun’s rays and are inert, so they don’t react with anything in your body. Modern formulations avoid giving you a pasty look. ●
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things to check before swallowing that pill What do you do when your doctor recommends an expensive medication? Pharmacist Andrew Burgdorf from the Upstate Cancer Center offers this advice: l
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l
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Find out how much of the bill your health insurer will pay, so you know how much you will owe. Upstate provides financial counselors to help patients understand expenses. Ask whether the drug manufacturer offers co-pay assistance, and explore options through organizations such as the American Cancer Society or the Cancer Financial Assistance Coalition. Think twice about purchasing more than a one-month supply at a time. If your medication needs change, you cannot return the drugs for a refund.
l
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Make sure your health care provider and pharmacist know about any supplements you take, including fish oil, since some supplements could reduce the effectiveness of some cancer drugs. Ask your health care provider and/or pharmacist what side effects are to be expected, what symptoms may signal an adverse reaction – and what to do if you experience a reaction.
Pharmacists such as Burgdorf, who specialize in oncology, can answer more specific questions. ●
Double-check the instructions regarding dosage and frequency and whether the pills should be taken with food or on an empty stomach.
UPSTATE IS CENTRAL NEW YORK’S COMPREHENSIVE STROKE CENTER choosing a hospital with comprehensive stroke certification means patients receive the highest possible level of stroke care. STROKES HAPPEN IN THE BRAIN.
comprehensive Stroke Center
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searCHing for Cures
Missing gene tied to lethal prostate cancer Men diagnosed with prostate cancer who lack a particular gene called WAVE-1 may have better survival odds if they are treated early. That’s according to research from scientists at Upstate Medical and Harvard universities, who worked together to link the absence of a WAVE-1 gene to a lethal form of prostate cancer. Their research – based on analysis of public databases – was published in March in the journal Oncotarget. “We observed that prostate cancer tumors contain a frequent deletion of the WAVE-1 gene. What’s important, though, is that this WAVE-1 gene deletion occurs in metastatic and lethal cancer, thus suggesting that the WAVE-1 gene loss may represent an aggressive subtype of prostate cancer, which is more challenging to treat and more likely to progress,” said study co-author Leszek Kotula, MD, PhD, associate professor of urology and biochemistry and molecular biology at Upstate. “It is possible that patients who have tumors characterized by the deletion of the WAVE-1 gene may benefit from earlier intervention, such as surgery or radiation therapy,” he said. The researchers found that alterations in the WAVE-1 gene were associated with a shorter period of remission in patients who were treated for prostate cancer. They also discovered that almost a quarter of the prostate cancers reviewed in the database lacked the WAVE-1 gene. WAVE gene complexes are involved in cell motility and migration, cellular adhesion and cell-to-cell communications, numerous processes that can play a role in tumor progression and the spread of cancer. “It is clear that disruption of the WAVE complex is associated with human cancers, including prostate cancer,” said Harvard’s Adam G. Sowalsky, PhD, an instructor in medicine. He said further investigation is needed, but “because lethal prostate cancers show this disruption, we may be able to identify mechanisms that lead to the tumor cell acquiring resistance to advanced therapies.” ABOUT PROSTATE CANCER After skin cancer, prostate cancer is the most common cancer among men. About 1 man in 7 will be diagnosed with prostate cancer during his lifetime. Most will not die from the disease, even though prostate cancer is the second leading cause of cancer death — behind lung cancer — for men.
Leszek Kotula, MD, PhD, associate professor of urology and biochemistry and molecular biology, in his Upstate laboratory. PHoto by WilliaM Mueller
The study was paid for by the National Institutes of Health and the Department of Defense. Gennady Bratslavsky, MD, and MD/PhD student Rebecca Sager from Upstate were also involved in the work. Kotula’s previous research implicated a gene called ABI-1 as a tumor suppressor in prostate cancer. The Oncotarget study built on that, setting out to find other genes that cooperate with ABI-1 in the progression of prostate cancer. They found WAVE-1. Now, Kotula’s lab is replicating the WAVE-1 gene deletion in mice. Such work can aid in the development of drugs or new treatments to suppress tumors or provide more ● precision in the treatment of thesePianist aggressive cancers. 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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searCHing for Cures
Wenyi Feng, PhD, is an assistant professor of biochemistry and molecular biology. PHoto by WilliaM Mueller
DNA
details may reveal where cancer begins
Nearly everyone has spots along their chromosomes that are considered “fragile,” where gaps or constrictions leave the chromosome vulnerable to breaking.
These areas are frequently affected in cancer, so they are of interest to cancer researchers including Wenyi Feng, PhD, an assistant professor of biochemistry and molecular biology at Upstate. Feng and her colleagues use budding yeast to map chromosome breaks and determine how and where they occur in human DNA. They believe fragile sites are the result of collisions between drug-induced unstable DNA replication and untimely gene transcription. They say this phenomenon could affect important genes, such as tumor suppressors, and that could allow cancer to develop. “While anti-cancer drugs are effective in preventing tumor cells from replicating, they can also alter gene expression simultaneously as they inhibit DNA replication. This is a phenomenon that has not been investigated widely,” said Feng. Her study was published in March in the journal Genome Research, with co-authors Elizabeth A. Hoffman, Andrew McCulley, Brian Haarer, PhD, and Remigiusz Arnak, PhD. In this study, the Upstate scientists showed how to improve the sensitivity and resolution of mapping chromosome breaks using a technique called Break-seq. They hope to use the technique to identify new cancer-associated genes. ● PHoto by susan kaHn
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w w w. u p s t a t e . e d u / c a n c e r
Q: A:
living WitH CanCer
My middle child has been diagnosed with leukemia, so much of my energy is focused on her treatment. What can I do so I don't lose touch with my older and younger daughters during this time? They are 16, 10 and 3. A good place to begin would be to ask your daughters how they feel that their sister is sick. Also ask them how they feel about all your attention and energy going into caring for her. Offer to spend some time individually with each of your other children along with your sick daughter. That way maybe they can become your little helper in taking care of her. If time allows, maybe a date night with each individual child would be helpful in reconnecting you both. Aliya Hafeez, MD, (pictured at right) is the chief psycho-oncologist at the Upstate Cancer Center and a cancer survivor. Reach her at 315-464-3615.
Milk and Rice Soup
PHoto by susan kaHn
This recipe from the “Betty Crocker Living With Cancer Cookbook” offers soothing nourishment to those with mouth sores. And because milk is added to bananas and rice in this dish, it can be an effective remedy for diarrhea as well. Ingredients
Preparation
1 cup uncooked regular long-grain rice
In a 2-quart saucepan, heat rice and water to boiling. Reduce heat to low; cover and simmer about 15 minutes or until water is absorbed and rice is tender. Let stand about 10 minutes or until cool enough to eat, or refrigerate.
2 cups water 2 bananas 2 ½ cups skim milk 2 tablespoons sugar
In medium bowl, completely mash bananas. Stir in cooked rice, milk and sugar. Serve immediately. Cover and refrigerate any remaining soup.
Nutritional information, per serving: 310 calories 1/2 gram fat 0 milligrams cholesterol 70 milligrams sodium 500 milligrams potassium 67 grams carbohydrates 2 grams dietary fiber 9 grams protein
This recipe makes four servings.
summer 2015
CANCER CARE
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Why physical therapy may be part of cancer care
adviCe froM exPerts
BY JIM HOWE
Cancer and its treatments can leave patients feeling nauseated, tired and out of condition, but research shows that exercise during treatment can help them feel better and function better. “The goal of physical therapy is to assist the patient with cancer to maintain their quality of life by managing the physical effects of the disease and/or its treatment,” said physical therapist Cassi Terpening, DPT. She and the other physical therapists first perform a thorough evaluation and then create a plan of care based on the patient’s impairments and goals. Every program is highly individualized, and changes can be made from session to session if needed. The therapists are sensitive to how the patient is feeling. “If they’re feeling very ill, we take it very easy,” Terpening said. They also consult with other members of the patient’s care team, which may include doctors, nurses, nurse practitioners, physician assistants, nutritionists and respiratory therapists. Services can be provided when patients are diagnosed, during treatment or once they enter survivorship. The course of treatment also varies. Some patients may be seen one time, and others may benefit from weekly sessions.
Cassie Terpening, DPT, in the therapy gym at Upstate’s Institute for Human Performance. Some appointments may be held at the Upstate Cancer Center.
Patients can meet with physical therapists at the Upstate Cancer Center for evaluations and treatments. A fully equipped therapy gym is located across campus at the Institute for Human Performance, and at outpatient sites in Manlius, East Syracuse and Syracuse. Therapy may include strengthening or balance exercise using free weights, resistance equipment, or Pilates equipment.
up,” she said. If fatigue is a problem, conserving energy throughout the day, such as sitting down while cooking, is important so that some energy is available to exercise.
PHoto by WilliaM Mueller
Walking is one activity that is safe for almost everyone, and it can be a comfortable way to increase the activity level for people who view exercise as daunting, she said. “The patient and I both decide when to end the treatment. When they are moving better, pain is managed and fatigue is better managed, they can continue independently,” she said. “At discharge I always tell people if there are any changes, questions, concerns in the future that they are welcome to return.” ●
“Research involving cancer patients is showing that too much rest is not good, and physical activity is important,” Terpening said, citing a recent study from the Netherlands. “Moderate exercise, as tolerated, is very helpful.” If a patient is deconditioned “we start very slow, and slowly try to build
Hear an interview at www.upstate.edu/healthlinkonair by searching “Terpening.” SAVE THE DATE
11th Annual
CANCER S
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COPING WITH THE CONSEQUENCES OF CANCER l
Friday, September 25, 2015 7:30 a.m. to 12:30 p.m. Upstate Medical University, Weiskotten Hall, 766 Irving Ave., Syracuse, NY 13210 .
Keynote Speakers Free and open to the public. R.S.V.P. Upstate Connect, 315-464-8668
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CANCER CARE
James Holland, MD, Distinguished Professor of Neoplastic Diseases, Mount Sinai School of Medicine in New York Jimmie C. Holland, MD, Wayne E. Chapman Chair in Psychiatric Oncology, Memorial Sloan Kettering Cancer Center
summer 2015
www.upstate.edu/cancer
Making a differenCe
Thirty-two students from Upstate Medical University participated on two teams in the Colleges Against Cancer event in April at Syracuse University’s Carrier Dome. Collectively they raised more than $2,000.
Tribute to an inspirational woman serves others with breast cancer When Jeanelle Crowell Cross, known to all as “Jel,” learned she had aggressive breast cancer, she immediately decided two things: 1. cancer would not define her and, 2. something good would come from her diagnosis.
The 31-year old teacher, who taught special education at Roxboro Road Elementary School in Mattydale, kept up with her full-time position and postgraduate classes despite the diagnosis of stage 4 ductal carcinoma that had spread to her lymph nodes and liver. “She would not let cancer define who she was or keep her from living a full and meaningful life,” said her mother, Jackie Gaffield, who recalls her daughter as an energetic teacher who inspired her students and as a creative young woman with a keen fashion sense who loved to bake and share treats with friends and family. She pursued those interests despite 18 months of chemotherapy, surgery and radiation treatment. In the years following her daughter’s death in September 2012, many tributes have followed, including a playground, a golf tournament, scholarships and a research grant named in her memory. Gaffield also made a gift to the Upstate Cancer Center in honor of her daughter, grateful for the care she received from Sheila Lemke, MD, and the treatment team. This gift helped, in part, to pay for an infusion
station where patients receiving chemotherapy treatments can look over the healing garden.
Family and friends also wanted to extend support to other young women who are being treated for breast cancer and drew their inspiration from Jel’s interests and zest for life. Jeanelle Cross Through the Upstate Foundation, the “AnJel Fund” extends personal services, such as makeovers, spa services, gym memberships, house cleaning and family entertainment packages to patients age 40 and under. “These offer an emotional lift when it is needed most,” said Gaffield. “We sometimes forget that these brave young women (and men) need pampering so that they feel beautiful and strong.” Lori Brzeczkowski, RN, is a breast cancer patient navigator at the Upstate Cancer Center who coordinates the fund. “The AnJel Fund is a thoughtful legacy which can provide comfort at a difficult time for young breast cancer patients,” she said. “The fund is an expression of the gratitude and fulfills Jeanelle’s wish to have a positive impact on others who share her diagnosis.” Young women interested in accessing personal services can contact Brzeczkowski by calling 315-464-3509. Donations to the AnJel Fund may be made at www.upstatefoundation.org/AnJel. ●
summer 2015
CANCER CARE
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He collected $5,000 one nickel at a time
Making a differenCe
BY JIM HOWE
The average person might not look forward to returning bottles and cans for the nickel deposit. But Laurence Segal, of DeWitt, has made that task part of a personal crusade to fight breast cancer. Aided at various times by his friends, family and girlfriend, as well as by people at Destiny USA, RealtyUSA, the New York State Fair, the Syracuse Chiefs and Wegmans, Segal redeemed 100,000 bottles and cans, enabling him to write a check in January for $5,000 to the Carol M. Baldwin Breast Cancer Research Fund of CNY. Wouldn’t it be easier for him just to ask for cash donations? “People don’t really miss a can or a bottle,” Segal said. “If it’s cash, they might say no. If it’s an empty can or bottle, they say, “Sure.” Those 5 cents add up quickly. If you had a million people give one can, that’s $50,000 you raised.” Segal, 37, is on his way to collecting his next 100,000 returnables, so he can write another check to the Baldwin fund, which sends all the money it raises locally to support research at Upstate Medical University.
Laurence Segal shows receipts from the bottles and cans he has redeemed to help cancer research. PHoto by susan kaHn
Cancer is highly personal for Segal, whose mother, grandmother and great aunt, as well as his girlfriend’s mother, were all affected by breast cancer, as was a former male coworker. In addition, a close friend, who often helped him on his collections, is currently battling a highly aggressive form of leukemia. Segal wants people to get screened for cancer and for research to be funded. Beth Baldwin, executive director of the fund that bears her mother’s name, praised Segal for the way he honors the cancer struggles of his mother. Laurie Segal, 60, was ostracized in 1987 when she had what was considered a radical operation, removing both breasts because of her increased risk of developing breast cancer. Segal’s family and friends have gotten used to helping him fill his car with bags of bottles and cans and heading to Wegmans to return them. And he has gotten good at working a return machine with each hand simultaneously. “I’m just one volunteer. I always tell people: Give a penny. Give a nickel. Give a dime. Just do it. Five cents is huge,” Segal said. ●
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CANCER CARE
summer 2015
www.upstate.edu/cancer
Making a differenCe
Hair today...
...Gone tomorrow
Several Upstate employees were among the 570 people having their heads shaved at Kitty Hoynes Irish Pub & Restaurant in Syracuse on March 1 to raise money for the St. Baldrick’s Foundation. The Upstate Golisano Children’s Hospital has received grants from St. Baldrick’s that pay for research to find cures for childhood cancers and that help survivors live long, healthy lives. Donations are still coming in, but the event at Kitty Hoynes this year raised about $450,000. Pictured before and after the St. Baldrick’s event are Tracy Kalinowski, who works in the pediatric infusion center; Russell Kincaid, from radiation oncology; Clare Rauch, senior assistant librarian; Sharon Huard, who works in student affairs; Alex Kalinowski, son of Tracy Kalinowski; Christopher White, who works in the pediatric infusion center; and Michelle Bergquist, who works in the library.
PHotos by susan kaHn (toP) and WilliaM Mueller (above)
summer 2015
CANCER CARE
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750 East Adams Street l Syracuse, NY 13210
UPClose
Comfort Cart
Volunteers at the Upstate Cancer Center staff a cart full of comfort items that they make available to outpatients and inpatients. A Kobalt tool cart was purchased with donations from Lowe’s Home Improvement Store and Room 2 Smile, an organization started by Brandon Spillett, of Syracuse, (pictured below) after his father, Daniel, died in 2005. Voss Signs wrapped the cart with a large vinyl decal so that the cart blends in with the center’s theme of nature. Spillett is an Upstate volunteer. PHoto by debbie rexine
On top of the cart: Cancer Care magazine, brochures about services at the Upstate Cancer Center Top drawer: lip balm, hand sanitizer, personal tissue packs, blank greeting cards, toothbrush-andtoothpaste packs and mouthwash.
15.086 0615 39.65M ELsk
Second drawer: American Cancer Society information and referral forms for various services the society makes available.
Third drawer: decks of playing cards, Crazy 8’s and Go Fish, plus paperback sudoko and crossword puzzle books.
Fourth drawer: small water bottles, hand lotion, throat lozenges.
Bottom drawer: a dozen Kindles, loaded with periodicals, to lend to patients.