cancer caresummer 15fnl

What your doctorwants you to know

about second opinions page 6

Why I hadmy ovariesremoved

page 8

How a tumoris diagnosed

page 9

Choosing the rightsunscreen

page 11

Food that soothesmouth sores

page 15

for anyone touched by cancerSUMMER 2015

Brought to you by the

A new perspective

page 4

careC A N E R

www. up s t a t e . e d u / c a n c e r2 CANCE R C A R E summer 2015

your guide

Patients come from miles aroundMore than a quarter of patients who receive at least part of their first course of cancer treatment at Upstate MedicalUniversity 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.

Before arriving:

• Do some research on the type of cancer you have. Find resources at www.upstate.edu/cancer under the “cancer types” tab.

• 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.

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.

• Parking ticket for validation.

For questions, please call 315-464-HOPE (4673).

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 ofthe treatment team who will discuss options and recom-mendations with the patient. Oncologists will have reviewedradiology and laboratory results and other information fromreferring physicians prior to the patient’s arrival.

0 to 4 miles (17%) 5 to 9 miles (13%) 10 to 24 miles (17%) 25 to 29 miles (28%) 50 to 99 miles (20%) 100 or more miles (4%)

Patients travel:

Halkin/Mason PHotograPHy, llC

What to expect at your first visit

•Syracus

e, NY

3summer 2015 CANCE R C A R E

CANCER CAREPUBLISHER Wanda Thompson, PhDSenior Vice President for Operations

EXECUTIVE EDITOR Leah CaldwellAssistant Vice President, Marketing &

University Communications

MANAGING EDITOR Amber Smith315-464-4822 or [email protected]

WRITERS Leah Caldwell, Jim Howe, Susan Keeter, Amber Smith

DESIGNER Susan Keeter

The Upstate Cancer Center provides thequarterly magazine, Cancer Care, for anyone touched by cancer. Send subscription requests and suggestions to [email protected] and request additional copies by calling 315-464-4836.Cancer Care offices are located at 250 Harrison St., Syracuse, NY 13202.

UPSTATE CANCER CENTERMEDICAL DIRECTOR

Leslie J. Kohman, MD

ASSOCIATE ADMINISTRATORRichard J. Kilburg, MBA

CARING FOR PATIENTSWhat 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 EXPERTSWhy e-cigarettes are a bad idea page 10

Understanding melanoma page 11

How to choose the right sunscreen page 11

What to consider before taking a medication page 12

SEARCHING FOR CURESA gene that’s linked to prostate cancer page 13

DNA details may reveal where cancer begins page 14

LIVING WITH CANCERKeeping connected with the siblings page 15

Food that soothes mouth sores page 15

Why exercise is important during treatment page 16

MAKING A DIFFERENCEMeet the man who raised $5,000 recycling cans and bottles page 18

Going bald for a cause page 19

inside

caref o r a n y o n e t o u c h e d b y c a n c e r

C A N E RThe 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 largestcomprehensive university system in the United States. For information on cancercenter patient services, call 315-464-HOPE (4673) or visitwww.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 ro-bust biomedical research enterprise and an extensive clinical health care systemthat includes Upstate University Hospital’s downtown and community campuses, the Upstate Golisano Children’s Hospital, and many outpatient facilities through-out Central New York — in addition to the Upstate Cancer Center.

On the cover: High school student and cancer patient Emily Breclaw at swim practice.

PHoto by susan kaHn

SUMMER 2015

Inside this issue5 1984 13


C aring for Patients

Emily Breclaw underwent four rounds of chemotherapy,each lasting a couple weeks. She dealt with three days ofnausea, and soon after that subsided, she had whole-bodymuscle aches with which to contend, but she said “I feltbetter going through chemo than I did for the eight months before.”

Breclaw, 16, a sophomore at East Syracuse Minoa HighSchool and a competitive swimmer, was sick for almost ayear. She would get tired. She had low-grade fevers everynight for five months, and night sweats. She would get outof breath. A blood test revealed anemia; iron supplementsdid not help. Breclaw struggled to concentrate andsometimes fell asleep in class.

“I would have to do my homework standing up becauseotherwise I would fall asleep,” she recalled.

Over the summer, she developed stomachaches and pain inher ribs. She also dealt with itchiness, and her troublebreathing got worse. Her family doctor ordered a chest X-ray and located a mass the size of an orange. He sent Breclawto Upstate Golisano Children’s Hospital, where pediatriconcologist 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 howsome people say they kind of knew? Something in me just knew.”

The next week was full of medical appointments to prepareBreclaw and her parents for the chemotherapy that beganNov. 4. She was found to have Hodgkin lymphoma, a

cancer that begins in the white blood cells. The AmericanCancer Society says Hodgkin lymphoma accounts for about3 percent of childhood cancers.

Breclaw missed a lot of school and a lot of swimming. Shereturned to classes in January, having lost her hair duringtreatment. “I went back with a hat, and people were OKwith 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 littlehair. 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 whatpeople 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 beforecomplaining. “I stop and think about the struggles I endured and the struggles that some children are still enduring.”

A new perspective

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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

SymptomsAn enlarged lymph node is the most common symptomof Hodgkin lymphoma, often appearing as a lump orbump 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

Hodgkin lymphoma changed her body and her mind



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BY AMBER SMITH

When Jessica Brickman of Camillusput her baby, Jack, to sleep that Friday last fall, the 9-month-oldwas just as jolly and happy as always. The little guy awoke withblack circles around his eyes,clearly not feeling well, and throwing up.

Emergency pediatricians at the Upstate Golisano Children’s Hospital explored whether Jackhad fallen or been injured. A computerized tomography scan revealed tumors on his skull, andone of the doctors prepared Brickman and Jack’s father, Robert Donnelly, for the news they would hear later that day.

Jack had an advanced form of neuroblastoma, the mostcommon cancer in infancy, which affects about 700 babiesin the United States each year. Pediatric oncologists at Upstate cared for 15 children with the diagnosis betweenJanuary 2010 and February 2015.

Jack’s tumors were classified as high risk, unusual for an infant under 18 months of age. It would require aggressivetreatment in order to improve his chance for a cure. Babieswith 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 hadstem cells removed and frozen to be returned to his bodylater. He underwent surgery to remove his tumors. Then his parents took him to Philadelphia for three weeks forspecialized radiation therapy before returning to Upstatefor 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 hisbody’s immune system find and destroy any remaining cancer cells. The infusions last from 10 to 20 hours overfour consecutive days, and they are painful. But Unituxinhas become part of the standard treatment for neuroblas-toma since researchers showed that children with high-risktumors who received the drug had survival rates of 66 percent, compared with rates of 46 percent among thosewho 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.

“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 thedrug in March. It’s only the third drug approved by theFDA specifically for the treatment of cancer in children.The medication has been available to patients at UpstateGolisano 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.”

Pediatric oncologist Irene Cherrick MD

PHoto by Cindy bell

Jack is being treated with a newly approved medication that has shown to boostsurvival rates by 50 percent. This medication — Unituxin — was available to Upstate pediatric patients during the clinical trial phase.

PHoto Courtesy tHe briCkMan-donnelly faMily

Newly approved drug boostspediatric cancer survival rates



You don’t need my permission to get a secondopinion. And, don’t worry that you are betraying meor hurting my feelings by asking for one. “I don’t

know one physician who would take this personally,” saidSrinivas Vourganti, MD, a urologist at Upstate MedicalUniversity who advised firing any doctor who did notsupport a patient who did so.

I can probably suggest two or three doctors youmight want to see for a second opinion, and myoffice staff might even be able to help schedule that appointment.

One of my partners can render a helpful secondopinion. Just because we work together does notmean we think alike.

It may make sense to seek an opinion from a doctorwho is not in the same specialty. An orthopedicsurgeon may say you need surgery, for instance, while a rheumatologist may recommend

physical therapy.

Second opinions should be automatic in situationswhere a doctor proposes an experimental procedureor a treatment that is unproven.

Check with your health insurer about coverage,because I have seen policies that won’t pay forsecond 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, seea doctor from a different region of the country,where medical practice styles are likely to differ.

Some institutions facilitate electronic second opinions sothat patients don’t have to travel.

As your doctor, part of my job is to help you digestthe information you find through your own researchand decide whether a second opinion makes sense.

“People come armed with a lot of information – not all of itgood or pertinent,” said Robert Dunton, MD, chief ofcardio-thoracic surgery at Upstate University Hospital. “Iwill tell you if I think you’re making a bad decision, but,”Dunton said, “if a patient picks an inferior choice knowingtheir options, that’s their prerogative.”

We’re in this together. If your gut is telling you tosee what another doctor thinks, you are not going tofeel right until you do.

You may not think you need a second opinion, but Imay want you to get one. Perhaps you need surgeryand there are different ways to do the operation.

Another surgeon’s input could help determine the bestapproach for your case.

20 things your doctor wants

you to know

1

5

4

6

3

10

27

9

8

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:

7summer 2015 C A N C E R C A R E


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Even though they are not in your possession, everynote and every slide that pertains to your carebelongs to you. If you want biopsy tissue to be

reviewed, for instance, you can grant permission for it to bereleased. Just realize that gathering all of your records,particularly if you have seen multiple physicians, is likely torequire a lot of your time.

If you face cancer, enlisting an oncologist may bemore important than only obtaining a secondopinion. An oncologist can help you manage your

disease and your decisions. You’d be surprised how manypeople who receive a cancer diagnosis go straight to surgeryor another treatment without considering the impact. “Theyget a procedure view, but they don’t get a life view. It’s notcancer management,” said Ajeet Gajra, a medical oncologistat the Upstate Cancer Center.

There are instances where you may want a thirdopinion or tie-breaker. Consider the diagnosis ofpectus excavatum, the abnormal development of the

rib cage in which the breastbone caves inward. One doctormay recommend no intervention. Another may favor anelaborate insertion of metal bars into the chest. Additionalinput may help you make a decision.

If your second opinion differs considerably from thefirst, “it’s time to have an honest discussion withyour provider,” said Gajra. “People need to under-stand there can be more than one valid approach.”

I would not want to lose you as a patient, but if youprefer the second doctor, I would tell you to get carewhere you feel most comfortable.

You may not need a second opinion. Many patientsat the Upstate Cancer Center, particularly those withcomplex cancers, have their cases presented at a

weekly multidisciplinary conference. This is where a varietyof cancer and medical specialists discuss your situation andreach a consensus on your best options — so you essentiallyreceive multiple professional opinions. This style ofmultidisciplinary care is becoming the gold standard.

If I’m the doctor providing a second opinion, I’ll domy best to give an unbiased opinion, regardless ofwhether 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 ifyour 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 bestraight with you. You are probably hoping thatanother doctor will be able to tell you that you don’t

have cancer, or that it is not so advanced, or that he or shehas a miracle cure. That almost never happens.

Most of the time after a patient gets a secondopinion, there is no change in his or her treatmentplan. However, they feel as if they are better educated – and that’s a good thing.

about

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The day my mother spiked a fever, we had no idea it was asymptom of ovarian cancer and that we would lose her justseven weeks later. Looking back, the only other possiblesymptom 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, andtreatment left me virtually 100 percent cured. Was there asimilar test for ovarian cancer that I didn’t know about?

When I asked my oncologist, he said, “I think you’re a goodcandidate for ovary removal, and if you choose to have thesurgery, 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 gynecologicaloncologist who had been part of my mother’s cancer careteam. She explained that the current tests for ovarian cancerare no better than a coin toss. “There are ultrasounds andblood tests for ovarian cancer, but they have only 60 percentaccuracy,” she told me. “This cancer tends to develop on thesurface 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 withovarian cancer. About two-thirds die from the disease,according to statistics from the New York State Departmentof Health. Those at highest risk for the disease can reducetheir chances of developing it by having their ovaries andFallopian 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.

My maternal great-grandmother had ovarian cancer, like mymother. And, I had an early stage breast cancer known asDCIS, ductal carcinoma in situ.

Our next step was to weigh the benefits of surgery againstthe possible health costs.

Agarwal explained that removing the ovaries means losingthe estrogen and progesterone they produce, which increasesthe risk of osteoporosis, heart disease and dementia forwomen under age 60.

That was sobering.

However, since the ovaries gradually decrease hormoneproduction and secretion, within about five years ofmenopause, 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-producedhormones likely behind.

She scheduled a couple of tests, and almost 10 months aftermy 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; thatevening, I watched my daughter’s dance rehearsal.


BY SUSAN KEETER

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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

A defensive moveRemoving the ovaries before cancer develops

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 SYMPTOMSl Bloating

l Pelvic or abdominal pain

l Trouble eating or feeling full quickly

l Feeling the need to urinate urgently or often

l 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 threeweeks, a woman should seek gynecological care. Women of all agesare at risk, especially those with a family history of breast, colon orovarian cancer. Early detection dramatically increases survival rates.




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As serious as it is, cancer is usually not an emergency,urologic oncologist Srinivas Vourganti, MD, told visitors tothe Upstate Cancer Center in April.

A cancer diagnosis is a step-by-step process that has to becomplete before exploring treatment options. If you rush tojudgment with incomplete information, you may faceunnecessary treatments or therapies that don’t jibe with yourbeliefs.

Vourganti said to think of a suspicious lump as a dogbarking in your backyard. The bark could belong to a varietyof dogs, from a toy poodle wearing a collar to a rottweiler

foaming at the mouth or something else entirely. You won’tknow for sure until you do some research.

Depending on the type of cancer suspected, that researchwill 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 cancerhas spread to the lymph nodes (N) and whether it has spreadelsewhere, or metastasized, (M).

They TNM staging and other factors to help create anindividual treatment plan.

SerViceS iNclude:• geriatric & memory assessments • Physical & medication review• Primary care for frail elders

upstate Specialty Services, 550 Harrison St., Syracuse

Patients, doctors or family members may request appointments: 315.464.5166

Need emergeNcy Or urgeNt cAre?Visit gem care, the only emergency roomdesigned for seniors age 65+.

upstate university Hospital, community campus4900 Broad rd., Syracuse(the former community general Hospital)

call upstate connect: 800.464.8668

UNIVERSITY GERIATRICIANS GEMCARE

UPSTATE.EDU

CARE FOR SENIORS

How a tumor is diagnosed

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e-cigarette use:high schoole-cigarette use:middle school

hookah use:high schoolhookah use: middle school

cigarette use:high schoolcigarette use:middle school

While traditional cigarette smoking declines among U.S. high school students, andstays the same among middle schoolers, the increasing use of electronic cigarettesand water pipes called hookahs means that tobacco use among teens remains steady.

adviCe froM exPerts

The use of electronic cigarettes by teens is soaring, causing concern among health experts whoquestion the safety of the battery-powered devices and complain that they are creating a newgeneration 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 smokebut still contains cancer-causing chemicals, said Leslie Kohman, MD, a lung surgeon and medicaldirector of the Upstate Cancer Center. While the U.S. Food and Drug Administration hasdeclared the main component of e-cigarettes, propylene glycol, safe for eating, she said, “Inhalingit is very different because the lungs absorb things in a very different way than the intestinaltract.”

Kohman is concerned about the lack of regulation, too. “E-cigarettes are manufactured in variouslocations around the world with no manufacturing controls, no safety controls whatsoever,” shesaid. The FDA has proposed regulations, and a group of health organizations in New York state istrying to add e-cigarettes to the state’s Clean Indoor Air Act, so the devices would be prohibitedanywhere cigarettes are prohibited.

Also, since an 18-month-old boy from the Albany area died after swallowing a small amount ofliquid 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 18years 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 highschool and middle school students, revealing underage tobacco use. Experts fear that three ofevery four teen smokers will continue into adulthood because almost 90 percent of adult smokerssay they first tried cigarettes as teens.

Electronic cigarette use soars among teen smokers

Tobacco use among teens

www. up s t a t e . e d u / c a n c e r10 C A N C E R C A R E summer 2015

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15%

10%

5%

0%

Hear an interview at www.upstate.edu/healthlinkonair by searching “cigarettes.”

adviCe froM exPerts


Keep track of changes to your skin, he said, mentioning the“ABCDE” guidelines commonly used to check for warningsigns of possible melanoma:

A (asymmetry): One half of a mole or birthmark does notmatch the other.

B (border): The edges of a mole are irregular, ragged orblurred.

c (color): The color is not the same all over.

d (diameter): The spot is larger than ¼ inch across – aboutthe width of a standard pencil eraser.

e (evolving): The mole is changing in size, shape or color.

Some melanomas do not fit these guidelines, but it’simportant to tell your doctor about any skin changes,growths that look different from your other moles, and spotsthat itch or bleed, he said.

Among melanoma’s risk factors:

l Having fair skin, although dark-skinned people can alsoget melanoma.

l A family history of melanoma.

l Exposure to ultraviolet (UV) light, such as sunlight ortanning lights.

“Fair-skinned patients are predisposed to sunburns,” Albertsaid, “and sunburns, especially blistering sunburns, put youat increased risk,” even years later.

“Evidence is becoming stronger that tanning beds do have anegative influence on people and increase their risk of skincancer,” Albert said, but the melanoma might occur 10 or 20 years later, and it can be hard for people to see the cause-and-effect relationship.

Tips for understanding melanoma

l Apply sunscreen a half hour before you go out in the sun.

l Reapply sunscreen frequently — every two to three hourswhen you’re in the direct sun.

l Make sure the label says the sunscreen shields against bothUVA and UVB rays. Sunscreens are traditionally weakerat getting UVA radiation.

l There’s no such thing as a truly waterproof sunscreen, soafter you get out of the water, you need to reapply yoursunscreen.

l Sunscreens are essentially the same for children and adults,although some are marketed for kids. For childrenyounger than 6 months of age, however, it’s probablybetter to dress them in protective clothing than to usesunscreen.

l Zinc oxide and titanium dioxide are good sunscreeningredients because they physically block the sun’s raysand are inert, so they don’t react with anything in yourbody. Modern formulations avoid giving you a pasty look.

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How to choose the right sunscreenYou can buy sunscreens with SPFs higher than 30, but youdon’t need a higher sun protection factor to protect your skinfrom the sun and ultraviolet radiation, according to RamsayFarah, MD, the division chief of dermatology at Upstate.

He offers this advice for reducing your risk of skin cancer aswell as sunburn:

Melanoma is one of the most aggressive forms of skin cancer and the leading cause of death from skin disease, killing anestimated 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 toother 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 MedicalUniversity.


adviCe froM exPerts

l Find out how much of the bill your health insurer willpay, so you know how much you will owe. Upstateprovides financial counselors to help patients understandexpenses.

l Ask whether the drug manufacturer offers co-payassistance, and explore options through organizations suchas the American Cancer Society or the Cancer FinancialAssistance Coalition.

l Think twice about purchasing more than a one-monthsupply at a time. If your medication needs change, you cannot return the drugs for a refund.

l Double-check the instructions regarding dosage andfrequency and whether the pills should be taken with food or on an empty stomach.

l Make sure your health care provider and pharmacist knowabout any supplements you take, including fish oil, sincesome supplements could reduce the effectiveness of somecancer drugs.

l Ask your health care provider and/or pharmacist whatside effects are to be expected, what symptoms may signalan adverse reaction – and what to do if you experience areaction.

Pharmacists such as Burgdorf, who specialize in oncology,can answer more specific questions.

things to check before swallowing that pill

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UPSTATE IS CENTRAL NEW YORK’S COMPREHENSIVE

STROKE CENTER

comprehensive Stroke Center

What do you do when your doctor recommends an expensive medication?Pharmacist Andrew Burgdorf from the Upstate Cancer Center offers this advice:

choosing a hospital with comprehensive stroke certification means patients receive the highest possible level of stroke care.

STROKES HAPPEN IN THE BRAIN.

Men diagnosed with prostate cancer who lack a particulargene called WAVE-1 may have better survival odds if theyare treated early.

That’s according to research from scientists at UpstateMedical and Harvard universities, who worked together tolink the absence of a WAVE-1 gene to a lethal form ofprostate cancer. Their research – based on analysis of publicdatabases – was published in March in the journalOncotarget.

“We observed that prostate cancer tumors contain a frequentdeletion of the WAVE-1 gene. What’s important, though, isthat this WAVE-1 gene deletion occurs in metastatic andlethal cancer, thus suggesting that the WAVE-1 gene lossmay represent an aggressive subtype of prostate cancer,which is more challenging to treat and more likely toprogress,” said study co-author Leszek Kotula, MD, PhD,associate professor of urology and biochemistry andmolecular biology at Upstate.

“It is possible that patients who have tumors characterizedby the deletion of the WAVE-1 gene may benefit fromearlier intervention, such as surgery or radiation therapy,” he said.

The researchers found that alterations in the WAVE-1 genewere associated with a shorter period of remission in patientswho were treated for prostate cancer. They also discoveredthat almost a quarter of the prostate cancers reviewed in thedatabase 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 intumor progression and the spread of cancer.

“It is clear that disruption of the WAVE complex isassociated with human cancers, including prostate cancer,”said Harvard’s Adam G. Sowalsky, PhD, an instructor inmedicine. He said further investigation is needed, but“because lethal prostate cancers show this disruption, wemay be able to identify mechanisms that lead to the tumorcell acquiring resistance to advanced therapies.”

The study was paid for by the National Institutes of Healthand the Department of Defense. Gennady Bratslavsky, MD,and MD/PhD student Rebecca Sager from Upstate were alsoinvolved in the work.

Kotula’s previous research implicated a gene called ABI-1 as atumor suppressor in prostate cancer. The Oncotarget studybuilt on that, setting out to find other genes that cooperatewith ABI-1 in the progression of prostate cancer. Theyfound WAVE-1.

Now, Kotula’s lab is replicating the WAVE-1 gene deletionin mice. Such work can aid in the development of drugs ornew treatments to suppress tumors or provide moreprecision in the treatment of these aggressive cancers.


searCHing for Cures

PHOTOS BY SUSAN KAHN

Leszek Kotula, MD, PhD, associate professor of urology and biochemistry andmolecular biology, in his Upstate laboratory.

PHoto by WilliaM Mueller

Missing gene tied to lethal prostate cancer

ABOUT PROSTATE CANCERAfter skin cancer, prostate cancer is the most common cancer amongmen. About 1 man in 7 will be diagnosed with prostate cancer duringhis lifetime. Most will not die from the disease, even though prostatecancer is the second leading cause of cancer death — behind lung cancer — for men. �

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 cancerresearchers including Wenyi Feng, PhD, an assistant professor of biochemistry andmolecular biology at Upstate.

Feng and her colleagues use budding yeast to map chromosome breaks and determinehow and where they occur in human DNA. They believe fragile sites are the result ofcollisions between drug-induced unstable DNA replication and untimely genetranscription. They say this phenomenon could affect important genes, such as tumorsuppressors, 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 andresolution of mapping chromosome breaks using a technique called Break-seq. They hope to use the technique to identify new cancer-associated genes.

www. up s t a t e . e d u / c a n c e r14

searCHing for Cures

CANCE R C A R E summer 2015

PHoto by susan kaHn

DNAdetails may reveal where cancer begins

Wenyi Feng, PhD, is an assistant professor of biochemistry and molecular biology.PHoto by WilliaM Mueller

�

Preparation

In a 2-quart saucepan, heat rice and water to boiling. Reduce heat to low; cover and simmer about 15 minutes oruntil water is absorbed and rice is tender. Let stand about 10 minutes or until cool enough to eat, or refrigerate.

In medium bowl, completely mash bananas. Stir in cookedrice, 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.

Ingredients

1 cup uncooked regular long-grain rice

2 cups water

2 bananas

2 ½ cups skim milk

2 tablespoons sugar

Milk and Rice Soup


living WitH CanCer

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.

PHoto bysusan kaHn

This recipe from the “Betty Crocker Living With Cancer Cookbook” offers soothingnourishment 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.

Q:

A:

My middle child has been diagnosed withleukemia, so much of my energy is focused on her treatment. What can I do so I don't losetouch with my older and younger daughtersduring this time? They are 16, 10 and 3.

www.upstate.edu/cancer16 CANCE R C A R E summer 2015

adviCe froM exPerts

BY JIM HOWE

Cancer and its treatments can leave patients feelingnauseated, tired and out of condition, but research showsthat exercise during treatment can help them feel better andfunction better.

“The goal of physical therapy is to assist the patient withcancer to maintain their quality of life by managing thephysical effects of the disease and/or its treatment,” saidphysical therapist Cassi Terpening, DPT. She and the otherphysical therapists first perform a thorough evaluation andthen create a plan of care based on the patient’s impairmentsand goals. Every program is highly individualized, andchanges can be made from session to session if needed. Thetherapists are sensitive to how the patient is feeling. “Ifthey’re feeling very ill, we take it very easy,” Terpening said.They also consult with other members of the patient’s careteam, which may include doctors, nurses, nursepractitioners, physician assistants, nutritionists andrespiratory therapists.

Services can be provided when patients are diagnosed,during treatment or once they enter survivorship. The courseof treatment also varies. Some patients may be seen onetime, and others may benefit from weekly sessions.

Patients can meet with physical therapists at the UpstateCancer Center for evaluations and treatments. A fullyequipped therapy gym is located across campus at theInstitute for Human Performance, and at outpatient sites inManlius, East Syracuse and Syracuse. Therapy may includestrengthening or balance exercise using free weights,resistance equipment, or Pilates equipment.

“Research involving cancer patients is showing that toomuch 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 patientis deconditioned “we start very slow, and slowly try to build

up,” she said. If fatigue is a problem, conserving energythroughout the day, such as sitting down while cooking, isimportant so that some energy is available to exercise.

Walking is one activity that is safe for almost everyone, andit can be a comfortable way to increase the activity level forpeople 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 isbetter 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.” �

Why physicaltherapy may be part of cancer care

Friday, September 25, 2015 l 7:30 a.m. to 12:30 p.m.Upstate Medical University, Weiskotten Hall, 766 Irving Ave., Syracuse, NY 13210.

CANCERS y m p o S i u m

Keynote Speakers

11th Annual

James Holland, MD, Distinguished Professor of Neoplastic Diseases, Mount Sinai School of Medicine in New YorkJimmie C. Holland, MD, Wayne E. Chapman Chair in Psychiatric Oncology, Memorial Sloan Kettering Cancer Center

COPING WITH THE CONSEQUENCES OF CANCER

Cassie Terpening, DPT, in the therapy gym at Upstate’s Institute for Human Performance. Some appointments may be held at the Upstate Cancer Center.

PHoto by WilliaM Mueller

Free and open to the public. R.S.V.P. Upstate Connect, 315-464-8668

SAVE THE DATE

Hear an interview at www.upstate.edu/healthlinkonair by searching “Terpening.”

Making a differenCe

summer 2015 CANCE R C A R E 17

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.

When Jeanelle Crowell Cross, known to all as “Jel,”learned she had aggressive breast cancer, she immediatelydecided 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 atRoxboro Road Elementary School in Mattydale, kept upwith her full-time position and postgraduate classes despitethe 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 herfrom living a full and meaningful life,” said her mother,Jackie Gaffield, who recalls her daughter as an energeticteacher who inspired her students and as a creative youngwoman with a keen fashion sense who loved to bake andshare treats with friends and family. She pursued those interests despite 18 months of chemotherapy, surgery andradiation treatment.

In the years following her daughter’s death in September2012, many tributes have followed, including a playground,a golf tournament, scholarships and a research grant namedin her memory. Gaffield also made a gift to the UpstateCancer Center in honor of her daughter, grateful for thecare she received from Sheila Lemke, MD, and the treat-ment team. This gift helped, in part, to pay for an infusion

station where patients receiving chemotherapytreatments can look over the healing garden.

Family and friends also wanted to extend support to other young women who are beingtreated for breast cancer and drew their inspiration from Jel’s interests and zest for life.Through the Upstate Foundation, the “AnJel Fund” extends personal services, suchas makeovers, spa services, gym memberships, house cleaning and family entertainment packages to patients age 40 and under. “These offer an emotional lift when it isneeded most,” said Gaffield. “We sometimes forget thatthese brave young women (and men) need pampering sothat 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 canprovide comfort at a difficult time for young breast cancerpatients,” 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.

Tribute to an inspirational womanserves others with breast cancer

Jeanelle Cross

�

www.upstate.edu/cancer18 CANCE R C A R E summer 2015

Making a differenCe

The average person might not look forwardto returning bottles and cans for the nickeldeposit. But Laurence Segal, of DeWitt, hasmade that task part of a personal crusade tofight breast cancer.

Aided at various times by his friends, familyand girlfriend, as well as by people atDestiny USA, RealtyUSA, the New YorkState Fair, the Syracuse Chiefs andWegmans, Segal redeemed 100,000 bottlesand cans, enabling him to write a check inJanuary for $5,000 to the Carol M. BaldwinBreast Cancer Research Fund of CNY.

Wouldn’t it be easier for him just to ask forcash donations?

“People don’t really miss a can or a bottle,”Segal said. “If it’s cash, they might say no. Ifit’s an empty can or bottle, they say, “Sure.”Those 5 cents add up quickly. If you had amillion people give one can, that’s $50,000you raised.”

Segal, 37, is on his way to collecting his next100,000 returnables, so he can write anothercheck to the Baldwin fund, which sends allthe money it raises locally to supportresearch at Upstate Medical University.

Cancer is highly personal for Segal, whosemother, grandmother and great aunt, as wellas his girlfriend’s mother, were all affected bybreast cancer, as was a former male co-worker. In addition, a close friend, whooften helped him on his collections, iscurrently battling a highly aggressive form ofleukemia. Segal wants people to getscreened for cancer and for research to befunded.

Beth Baldwin, executive director of the fundthat bears her mother’s name, praised Segalfor the way he honors the cancer struggles ofhis mother. Laurie Segal, 60, was ostracizedin 1987 when she had what was considereda radical operation, removing both breastsbecause of her increased risk of developingbreast cancer.

Segal’s family and friends have gotten usedto helping him fill his car with bags ofbottles and cans and heading to Wegmans toreturn them. And he has gotten good atworking a return machine with each handsimultaneously.

“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.

He collected $5,000 one nickel at a time

�

BY JIM HOWE

315-207-9066OswegoRadiationOncology.com

OswegoRadiation Oncology

Seneca Hill Health Campus105 County Route 45A

We offer you the same top-flight treatments and expert staff. stay in oswego for your treatments —it’s convenient!

Featuring the same advanced radiation treatmentavailable at the Upstate Cancer Center

FROM OSWEGO? THERE’S TREATMENT CLOSE TO HOME.

Laurence Segal shows receipts fromthe bottles and cans he has redeemedto help cancer research.

PHoto by susan kaHn


Making a differenCe

Several Upstate employees were among the 570 people having their heads shaved at Kitty Hoynes Irish Pub & Restaurant inSyracuse 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 forchildhood cancers and that help survivors live long, healthy lives. Donations are still coming in, but the event at Kitty Hoynesthis 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.

Hair today...

...Gone tomorrow

PHotos by susan kaHn (toP) and WilliaM Mueller (above)

750 East Adams Street l Syracuse, NY 13210

Comfort CartVolunteers at the Upstate Cancer Center staff a cart full of comfort items that they makeavailable 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 byBrandon 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 thecenter’s theme of nature. Spillett is an Upstate volunteer.

PHoto by debbie rexine

UPClose

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Bottom drawer: a dozen Kindles, loaded with periodicals, to lend to patients.

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-and-

toothpaste packs and mouthwash.

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.

cancer caresummer 15fnl

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