Cancer Care magazine, Spring 2020

care CANCER

for anyone touched by cancer

What happens if you can’t tell where a tumor began?

A mission to improve childhood cancer care in developing countries When a nurse practitioner becomes a patient

Researcher shares lessons she learned from lung cancer Brought to you by the

Spring 2020

YoUR g UI De

Should you consider a clinical trial? linical trials are research studies that people

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volunteer to join to evaluate new drugs, devices,

or procedures.

Most of the standard treatments used to treat cancer today were tested and shown to be effective through clinical trials — and the successful therapies of tomorrow are in research today.

If you have cancer, you may be interested in participating.

Thirteen things to consider: • You have to qualify in order to join a particular clinical trial. Protocols explain exactly who can or cannot join each trial, sometimes determined by your age, gender, the type or stage of cancer you have, and the kinds of therapy you’ve undergone.

• Before joining a trial, volunteers undergo testing to make sure they won’t be put at risk by the treatments in a study.

• You do not have to participate in all phases of a clinical trial. Before a treatment becomes standard, it goes through three or four clinical trial phases.

The early phases make sure the treatment is safe. Later phases show if it works better than standard treatment.

• Depending on the trial, you may be randomly assigned to the “control group” of people who receive standard treatment or the “investigational group” of people who receive the treatment under study. Neither you nor your doctor get to choose which group you are in.

• You can ask researchers how the trial could affect your daily life, how often you will have appointments and what will be involved. You can ask what your treatment choices are and how they compare with the treatment being studied.

• You must give your informed consent before participating. That means you will learn the purpose, risks and benefits of a trial before deciding whether to join. Even after you join, you have the right to leave a clinical trial at any time.

• Federal rules are meant to ensure clinical trials are run in an ethical manner, with oversight from scientific review panels, an institutional review board (IRB), data and safety monitoring boards and your research team.

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• If you’re in the “investigational group” and the new treatment is proven to work, you may be among the first to benefit. But you have to realize new treatments are not always better than, or even as good as, standard treatment —

C A N C E R C A R E l spring 2020 l upstate.edu/cancer

and they may have side effects that doctors don’t expect.

• If you’re in the “control group,” you’ll have access to high-quality standard cancer care. It may not be as effective as the new treatment being studied. Or, it may prove more effective.

• Investigational treatments and standard treatments that are proven effective may not be effective for you.

• The National Cancer Institute, drug companies, medical institutions and other organizations sponsor clinical trials, but your health insurer or managed care provider will likely be billed for some patient care costs.

Find out what will be paid for ahead of time.

• Your participation gives you the chance to help others and improve cancer treatment.

• Researchers at Upstate have many clinical trials that are focused on various types of cancer, including, but not limited to, breast, lung, colon, prostate and ovarian. Access is also available to national prevention and disease treatment trials through the Upstate Cancer Center’s association with cancer networks throughout the country. Learn more at upstate.edu/cancer under the “research” tab. CC

care C o N T e N T S CANCER

The Upstate Cancer Center is part of Upstate Medical University in Syracuse, N.Y., one of 64 institutions that make up the State University of New York, the largest comprehensive university system in the United States. 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, Upstate Community Hospital, the Upstate Golisano Children’s Hospital and many outpatient facilities throughout Central New York — in addition to the Upstate Cancer Center. It is located at 750 E. Adams St., Syracuse, NY 13210.

oN The CoveR Lung cancer survivor Wanda Coombs works in a microbiology and immunology lab at Upstate Medical University.

See story, pages 10-11.

CaRINg FoR paTIeNTS

The caregiver is now also a patient page 4 Earrings let her brighten other patients’ days page 7

10 things a research technician learned about lung cancer page 10

ShaRINg expeRTISe

If your tumor’s origins are unknown, here’s one thing you need to ask about page 12

CaNCeR CaRe

MANAGING EDITOR WRITERS

Amber Smith 315-464-4822 or smithamb@upstate.edu

DESIGNER

Jim Howe Susan Keeter Amber Smith

Susan Keeter

Focusing on her future page 8

She found her calling page 9

PHOTO BY ROBERT MESCAVAGE

EXECUTIVE EDITOR Leah Caldwell Assistant Vice President, Marketing & University Communications

3 facts about a endometrial cancer Researching for a way to soften the blow of chemotherapy

LIvINg wITh CaNCeR

Fusilli with Broccoli and Deconstructed Pesto

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An Up Close look at a tool of microsurgery back cover

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MakINg a DIFFeReNCe

Kara’s Fund lets recipients know the community cares page 20

UpSTaTe CaNCeR CeNTeR DIRECTOR (INTERIM)

Spring 2020

Jeffrey Bogart, MD

DEPUTY DIRECTOR (INTERIM) Gennady Bratslavsky, MD ASSOCIATE DIRECTOR FOR CLINICAL RESEARCH Stephen Graziano, MD

ASSOCIATE DIRECTOR FOR BASIC AND TRANSLATIONAL RESEARCH Leszek Kotula, MD, PhD

ASSOCIATE DIRECTOR FOR COMMUNITY OUTREACH Leslie J. Kohman, MD ASSOCIATE ADMINISTRATOR Richard J. Kilburg, MBA 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 315-4644836. Cancer Care offices are located at 250 Harrison St., Syracuse, NY 13202.

Global outreach aims to improve pediatric cancer care

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A new perspective He specializes in cancer care; now he’s got patient experience

BY AMBER SMITH

n the weeks before nurse practitioner Ibrahim Thabet

Thabet finished seeing his patients that afternoon. Then he took leave.

turned 31, he took care of patients with cancer, as he

At home, talking privately, his wife, Sara began crying.

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has for more than eight years at Upstate.

In the weeks after his birthday, he became a cancer patient.

Thabet had a rare cancer with a poor prognosis. After months of treatment, he’s back at work. One of his patients says he’s got “street cred” now. This is his story.

a troubling cough It was a mid-October weekend in 2018 when Thabet noticed a cough. “For some reason, I couldn’t complete a sentence without coughing.” He sometimes deals with a cough that comes from drippy sinuses, so he was ready to ride it out.

But he was also feeling a bit of pressure in his chest, and his mother was insisting he go to an urgent care clinic.

An X-ray showed dilated arteries in his lungs. The urgent care doctor suggested Thabet may have pulmonary artery hypertension, or high blood pressure in the lungs. The diagnosis was troubling to Thabet, who was otherwise healthy.

He decided to mention it at work Monday to his colleague Stephen Graziano, MD, Upstate’s chief of hematology and oncology. The two men had become friends, having worked together the past six or seven years. Graziano listened to Thabet’s story about his urgent care visit; he also didn’t like the sound of Thabet’s cough.

As it turned out, Graziano was headed to a meeting with Ernest Scalzetti, MD, the chief of thoracic imaging. He invited Thabet to come along and show Scalzetti the X-ray.

Scalzetti, a renowned radiologist who specializes in cardiopulmonary imaging, studied the image. “I think I see something,” he said.

Thabet would need an additional imaging scan using computerized tomography.

Later that day, the CT revealed a mass in the front of Thabet’s chest, sitting on his heart and lungs. The tumor was 9.6 centimeters, just under 4 inches. That’s what was causing the pressure he felt and the cough.

Taking leave “I have a very strong faith,” Thabet said.

While his medical colleagues went over the disease the mass might signal, he sat thinking “to God we belong, and to God we shall return,” a phrase Muslims recite in times of tragedy. Then he thought of his children: Dhuha, 10; Jenna, 7; Ismael, 6; and Aleena, 4 months.

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Thabet underwent several blood tests the next day, including one to measure his alpha-fetoprotein level. A normal level for an adult is less than 10 nanograms per milliliter. Thabet’s was 4,912 nanograms per milliliter.

The results indicated cancer.

Among the additional tests he underwent was an echocardiogram, an ultrasound of his heart.

Graziano, the cancer doctor who works with Thabet, was at a conference in Chicago as all the test results came in. He and Thabet texted back and forth.

Thabet’s diagnosis was a rare cancer: He had an extragonadal mediastinal germ cell tumor. Those tumors develop from sperm or egg cells that stray from their intended location in the gonads.

This happens during the time a fetus is developing in utero, when the gonads are starting to form.

“Most of us have these cells, and they don’t become cancerous,” explained Graziano.

Extragonadal cells that go on to develop into tumors may grow anywhere in the body. Usually they begin in organs such as the pineal gland in the brain, the back wall of the abdomen, or in the mediastinum, the area between the lungs, according to the National Cancer Institute. That’s where Thabet’s tumor grew.

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Nurse practitioner — and cancer survivor — Ibrahim Thabet, right, with his Upstate oncologist and colleague, Stephen Graziano, MD. PHOTO BY SUSAN KAHN

Finding hope “People who have rare cancers, in general, tend to lack hope because there’s not that research or data out there to show the outcomes,” he said.

Thabet relied on his faith.

Sam Benjamin, MD, became Thabet’s oncologist. He came up with a treatment plan. Before starting treatment, like many patients with the diagnosis of a rare cancer, Thabet sought a second opinion.

Graziano recommended Thabet travel to Indiana University School of Medicine, where he knew of a particular doctor who treats more patients with Thabet’s diagnosis each year than most doctors treat their whole careers.

Thabet would be one of about six patients with extragonadal germ cell tumors that Lawrence Einhorn, MD, would see in 2018. The doctor agreed to see Thabet three days later, on a Monday.

So one week after the X-ray at the urgent care center, Thabet and his family loaded into a car and drove to Indianapolis. Einhorn told him the cancer he had was considered high risk, and it had a poor prognosis.

Thabet discourages patients from asking their survival odds, but Thabet couldn’t help himself. He wanted to know his chance of surviving. The doctor was straight with him: 30%. continued on page 6 upstate.edu/cancer l spring 2020 l C A N C E R C A R E

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A new perspective

continued from page 5

After the consultation, Thabet drove back to Syracuse to begin chemotherapy at Upstate. Einhorn agreed with the plan Thabet’s oncologist had proposed.

didn’t make it through chemo, and their tumor markers didn’t respond. He was simply grateful to have made it this far.

He would be hospitalized for a week of infusions, then go home for two weeks. Then he’d return for another week of chemo, and go home for two more weeks. And so on, until mid-January. During his hospitalizations, because of his heightened risk of infection and how sick and weak he became, Thabet had to go without seeing his children.

Moving forward

Choosing Upstate He chose Upstate for his care, among Benjamin and other caregivers who are colleagues, because “I trust the people here,” Thabet said. “I’ve seen them deal with patients, and I know the level of care and the state-ofthe-art facility we have.”

Thabet was encouraged after his first round of chemo.

That pressure in his chest went away. And, his alpha-fetoprotein level that had been 4,912 nanograms per milliliter dropped to 751. After the second round, it was down to 55.

The third round brought it to 7; the fourth, 3. At the conclusion of the infusions, another CT scan of his heart revealed the mass had shrunk in half, to 4.5 centimeters.

Einhorn, the doctor in Indiana, had told Thabet three things needed to happen before moving forward with treatment: The tumor had to shrink. The tumor markers or blood work needed to normalize. And, he needed to tolerate chemo.

With all three accomplished, Thabet returned to Indiana in early February.

“Your tumor shrank, but…” the surgeon began. Thabet wasn’t discouraged about the “but.” He knew many patients

The “but” referred to the delicate surgery Thabet would have to undergo, to remove the remnants of the tumor. It was sitting on the phrenic nerve, which allows the diaphragm to expand and contract. If the nerve was cut, Thabet would be left unable to breathe normally.

The operation to remove what was left of the tumor lasted about an hour and a half. The phrenic nerve was undamaged. Thabet spent a week recovering in the hospital.

On the third day, the pathologist’s report came back with encouraging news. The tissue removed by the surgeon was dead tissue. It appeared the cancer was out of Thabet’s body.

“We feel there’s a possibility you are cured,” the surgeon told him.

Thabet undergoes blood work and scans every couple of months. “Obviously there’s a chance it could come back,” he explains, “but I don’t let it dictate my life.”

He recovered enough to return to work at the Upstate Cancer Center in early April. Thabet brings with him a new understanding and ability to relate to patients. So many physical, mental and emotional aspects are similar among the various types of cancers. He says the experience has made him a better nurse practitioner. “You gain things that are not taught in a book.”

Before, he could describe how a port was installed. Now he can tell patients what it will feel like to have it done.

Before, he believed he was cognizant of what patients were feeling. Now, as one patient said to him, “you’re one of us.” CC

YOUR CONCUSSION

EXPERTS Older adults are more likely to sustain injury from falls.

The Upstate Concussion Center provides comprehensive evaluation and treatment services for concussion, including sports concussion.

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315.464.8986 WWW.UPSTATE.EDU/CONCUSSION

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CaRINg FoR paTIeNTS

Earrings, anyone?

Breast cancer patient finds generosity brightens the journey

BY SUSAN KEETER

t was her bald head and the dingy stick-straight hair

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that grew back after chemotherapy that got Jacqueline

Rose passionate about earrings. She bought herself

lots of pairs — glittery, silly, colorful — anything that was fun and made her feel attractive.

Rose thought that other women undergoing cancer treatment could use a similar boost and decided to leave a gift basket of earrings, anonymously, at the Upstate Cancer Center at Oneida, where she sees her oncologist Mijung Lee, MD. The cancer center staff learned of her good deed and now lets her know whenever the basket needs replenishing.

“I enjoy sitting in the waiting room and watching a patient pick out a pair of earrings,” says Rose. “It makes me smile.”

Rose’s Story Rose was diagnosed with breast cancer in 2018. In May of that year, her gynecologist felt a small lump in her armpit during a breast exam. Rose made an appointment with breast surgeon Mary Ellen Greco, MD, at Upstate Community Hospital in Syracuse. Greco did a biopsy that day. Rose learned she had cancer a few days later and had a lumpectomy later that week. Greco ordered a blood test for genetic testing. Rose found out she had the genetic mutation PALB2 and triple negative breast cancer, a diagnosis that put her at higher risk and made her cancer more difficult to treat. Greco gave Rose a choice: alternating breast MRIs and mammograms every six months for the rest of her life, or a bilateral mastectomy.

Rose chose the surgery.

Prior to the mastectomy, Rose had 16 rounds of chemotherapy at the Oneida center, 10 minutes from her home in Canastota. Chemo made her tired, but not sick, and steroids caused her to gain weight. Rose kept reminding herself, “Other people have it a lot worse.”

At the Upstate Cancer Center in Syracuse, Greco performed the double mastectomy, and breast reconstruction was done at the same time by Prashant Upadhyaya, MD. To further reduce her cancer risk, Rose has had her ovaries and uterus removed, and has contrast MRIs of her pancreas done annually. She sees Lee every three months in Oneida and will see Greco every six months for the rest of her life. CC

Jacqueline Rose with a basket of earrings.

PHOTO BY DEBBIE REXINE

what is paLB2?

A mutation in the PALB2 gene is linked to an increased risk for breast cancer and possibly pancreatic, ovarian and other cancers.

—BREASTCANCER.ORG AND FACINGOURRISK.ORG

what is triple negative breast cancer?

Triple negative refers to cancerous tumors that do not have the three common receptors that fuel breast cancer growth (estrogen, progesterone and HER2/neu). This means that common treatments — hormone therapy and drugs — are ineffective.

It occurs in 10% to 20% of cases.

—NATIONALBREASTCANCER.ORG

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Officer Rosie Preschooler undergoes treatment for rare cancer

BY AMBER SMITH

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hen Rosie Snowdon

grows up, she wants to be a police officer.

The village of Baldwinsville — where Rosie’s parents, Jake Snowdon and Arianna Leonard, were both born and raised — coordinated with the police department and Maureen’s Hope Foundation to present Rosie with a uniform and motorized toy cruiser in November.

Rosie, 4, is in treatment at the Upstate Cancer Center for recurrence of rhabdomyosarcoma, a rare cancer.

She was 2½ in the summer of 2018 when her parents noticed something seemed wrong with her belly button. Rosie had a tumor. She underwent surgery to have it removed. Then she began chemotherapy. Ten months later, in May 2019, after what was supposed to be her last infusion, she rang the survivor bell.

When Rosie returned for a checkup scan in September, however, doctors found a new tumor.

She underwent another surgery, and she’s back on chemotherapy infusions. She also undergoes radiation therapy.

“She’s really brave. She does well with it,” her mother, Arianna Leonard says. During radiation therapy, Rosie must be anesthetized. During infusions, she occupies herself doing craft activities with other children who are in treatment, or watching cartoons on an iPad, snuggled beneath a “Frozen” blanket. CC

Rosie Snowdon was sworn in as an honorary Baldwinsville police officer.

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PHOTO BY LAUREN LONG/THE POST-STANDARD

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Early detection saved her Now it’s her job to encourage mammograms

BY AMBER SMITH

hristina Wallace was due for a mammogram,

Monday morning to have a lumpectomy.”

but she had just begun a new job and didn’t

That was in December 2014. Early in January 2015, she saw oncologist Sam Benjamin, MD, an assistant professor of medicine at Upstate who also sees patients in Oswego, near Wallace’s home. He oversaw her cancer treatment and continues caring for her.

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want to ask for time off. She canceled the appointment.

That night, she stretched out on her couch.

Her cat, Gracie, jumped onto her, a paw landing on a painful spot on her breast.

She reached up and felt a lump.

She rescheduled the mammogram.

At the age of 38, Wallace’s second screening mammogram confirmed the lump she had felt.

When biopsy results indicated cancer on a Friday, she admits, “I was so freaked out, I was in surgery by

Christina Wallace with Gracie, who helped her find a lump.

PHOTO BY SUSAN KAHN

Wallace had a job at Oswego Hospital, but she wasn’t able to work on the days she received chemotherapy or radiation, so she took a leave to focus on her health.

She had medullary breast cancer, a rare type of invasive ductal cancer that begins in the milk ducts before spreading to the tissues around the duct. Surgery to remove the tumor is usually the first step of treatment, which may also include radiation therapy. That’s typically followed by systemic therapy — which may include hormone therapy, chemotherapy and/or therapy that targets specific proteins.

People who carry a genetic mutation known as BRCA1 are somewhat more likely to develop medullary breast cancer. Wallace says she has that gene, plus a related gene call PALB2, which her mother also had. Her mother was diagnosed with breast cancer after Wallace completed her treatment. Only, her mother’s cancer continued on page 11 upstate.edu/cancer l spring 2020 l C A N C E R C A R E

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What she learned about lung cancer Her diagnosis offered many lessons to this research technician

BY AMBER SMITH

anda Coombs

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went for her annual med-

ical exam in January 2016.

“I wasn’t even going to tell the doctor I had a cough, because in January everybody has a cough, but at the end of the appointment, she said, ‘Is there anything else that’s bothering you?’”

Two X-rays and a computerized tomography scan later, Coombs had a diagnosis of lung cancer and a date for surgery. Her surgeon removed one of the lobes of her left lung, and the tumor was found to be 4.5 centimeters, a little bigger than a walnut.

Coombs, 56, of DeWitt has worked at Upstate as a microbiology research technician since 1986, soon after graduating from SUNY Binghamton with a degree in biology.

Wanda Coombs works in a laboratory in Upstate’s Weiskotten Hall.

PHOTO BY ROBERT MESCAVAGE

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Early detection continued from page 9

had spread throughout her body before it was discovered, and she died at the age of 59.

To raise awareness of lung cancer, Coombs was asked to drop the puck at a Syracuse PHOTO COURTESY SYRACUSE CRUNCH Crunch hockey game last fall.

Before her diagnosis, she already knew a lot about cancer and science and medical care — yet her experience with lung cancer taught her some things: 1. Lung cancer is treatable, especially when caught early.

2. If you’re diagnosed with cancer, see an oncologist. Coombs felt fine after surgery, but she made an appointment with Stephen Graziano, MD, because she wanted an expert to follow her care.

3. experts can disagree. Her surgeon does not recommend chemotherapy for tumors of less than 5 centimeters. Her oncologist recommends chemotherapy for tumors larger than 4 centimeters. Under a microscope, Coombs’ tumor looked like a squamous cell carcinoma, a slow-growing type of lung cancer that is almost always caused by smoking. Coombs was not a smoker. Graziano and colleagues examined her pathology and medical scans and determined her cancer to be a rare type influenced by the Epstein-Barr virus — for which chemotherapy was not recommended.

4. Listen to your body. Coombs was vigilant, and when back pain developed at the site of her surgical scar two years after her operation, Graziano sent her for medical images that revealed “three little spots” near her lung, Coombs recalls.

That’s when Graziano prescribed chemotherapy and immune therapy.

5. Second opinions can be reassuring. Coombs went to Memorial Sloan Kettering Cancer Center in New York City and learned that doctors there recommended the same course of treatment she was receiving at Upstate.

“I’m a huge advocate for early detection and regular mammograms,” Wallace says. She was vigilant. Her mother was not. “Had she been practicing that, she might still be Sam Benjamin, MD with us.”

After she recovered from reconstructive therapy and cancer treatment, Wallace found her calling. She has a new job as a program specialist and case manager for Oswego County Opportunities. She helps connect people with screening for breast, cervical and colorectal cancer. She helps people find doctors, or health insurance, or both, and she guides them through what to do if any of the screenings are abnormal.

Sometimes she tells people what she’s been through.

6. Treatment recommendations evolve. The spots seemed to shrink at first, but when one grew a little bit, Graziano and radiation oncologist Jeffrey Bogart, MD, recommended radiation therapy.

“I’ve had a few people who will say ‘I have no cancer history, and I had my mammogram last year, so I’m good.’

That’s when I say, ‘Wait a minute....’

7. Not all information is helpful. As she read about her disease, Coombs began to realize that much of what she found was more frightening than informative.

Each patient is different. “Everybody is an individual, and how I respond to treatment is different than how anybody else will,” she says.

“I feel like, if my story is going to motivate them to take care of themselves, then I’m going to share it.”

8. Therapy may have side effects. Her first round of chemotherapy did not affect her hair, but Coombs said she lost her hair when she was switched to another type. The immune therapy she was taking damaged her adrenal gland, so now she sees an endocrinologist. And, during her treatment she developed an allergy to the antibiotic amoxicillin.

9. Staying busy is beneficial. Coombs says that continuing to work full time helps her to manage the fear that the cancer might return and to feel normal.

10. Supportive loved ones help her stay positive. She admits there are days when she starts to feel sorry for herself, but Coombs says the support of her husband, Jeff, and daughter, Samantha, helps her maintain a good mood.

She is grateful for every day. CC

Wallace continues to see Benjamin, the oncologist, every six months, in addition to regular appointments with her primary care doctor, gynecologist, radiation oncologist, and a doctor who specializes in the gastrointestinal system. Her follow-up care includes regular blood work and medical imaging. She maintains a strong faith.

And every night, she comes home to her cat, Gracie. CC upstate.edu/cancer l spring 2020 l C A N C E R C A R E

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What’s the biology of your cancer?

Treatment is moving from one-size-fits-all into the modern era of personalization

BY AMBER SMITH

mong people who receive a cancer diagnosis, up to 8 percent won’t ever find out

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in which organ their cancer began. Because the cancer has metastasized, or

spread, before it is discovered, it usually comes with a poor prognosis.

This type of cancer – known as CUP, or carcinoma of unknown primary – is among the most challenging types of advanced cancer to treat.

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ShaRINg expeRTISe

Some doctors will prescribe chemotherapy, with the goal of shrinking the tumor or improving symptoms.

A growing number of doctors will say, “We may not be able to know where your cancer started, but what’s the biology of your cancer?”

Up to a third of people diagnosed with CUP will have a genetic marker for which a new medication is available, says Jeffrey Ross, MD, an assistant professor of pathology and urology at Upstate and the medical director for Foundation Medicine in Cambridge, Mass. “But you won’t find it unless you sequence the tumor.”

Each person’s cancer has a unique combination of genetic changes, and tumor DNA sequencing is done to identify those changes. Some genetic alterations or mutations can help guide treatment plans, possibly pointing to

medications that can prolong a person’s life by months or years.

This new generation of anti-cancer drugs is being developed together with diagnostic tests, which help predict which patients can be helped by a particular drug. For instance, some targeted therapies are effective for people only if their cancer cells have a specific mutation that causes the cancer cells to grow a certain way. Some immunotherapy medications will work only when there are a certain number and type of genetic alterations.

Ross says Medicare and most health insurers pay for at least one of the sequencing tests in use today. However, not all of the potential therapies are covered.

Tumor DNA sequencing is not meant for everyone who has cancer.

Remember this: Get yourself to an academic medical center where tumor DNA sequencing is an option if you have a cancer whose origin cannot be determined.

Up to one-third of people with CUP – the medical abbreviation for carcinoma of unknown primary – have an individual cancer characteristic that can be treated with an immunotherapy and/or targeted cancer therapy, but not until the biology of the tumor is known.

Approvals for new therapies are happening with such speed that keeping track of what’s available, its side effects and interactions requires expertise.

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How is tumor DNA sequencing done?

A sample of your tumor and, in some cases, a sample of your healthy cells must be removed either during surgery or through a biopsy.

Your samples will be sent to a specialized lab — such as the one at Upstate Medical University — where researchers will isolate your DNA and then use a machine called a DNA sequencer to “read” it. They will then analyze the sequence of your DNA to determine if there are any genetic alterations that make your tumor susceptible to certain treatments. They may also examine the DNA sequence of your healthy cells to determine if you have any inherited mutations that can influence treatment decisions.

Based on your tumor’s unique genetic alterations, the specialized lab may generate a report that lists treatments to which your tumor is likely to respond.

SOURCE: NATIONAL CANCER INSTITUTE

What’s the biology? continued from page 13

And, it can’t help everyone with a CUP diagnosis.

Unfortunately, sequencing often reveals targets for which drugs do not yet exist, Ross explains. In the year 2020, about one-quarter to one third of those who undergo tumor DNA sequencing will learn of a potential treatment.

Ross says he expects one day about half of those tested will find new treatment options.

Currently, though, many people undergo batteries of tests, in hopes of identifying the primary tumor from which their cancer has spread. Without answers, they are diagnosed with CUP. 14

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Many doctors will recommend anti-cancer treatment or palliative care to relieve these patients’ symptoms.

Only about one in 10 of these patients survives a year.

“Standard treatment for CUP has not changed in decades so, if we can change the outcome for the one in three patients with targetable mutations identified by DNA profiling, that could have an important impact on CUP therapy,” says Ross, one of the leaders of the molecular laboratory in the Central New York Biotech Accelerator at Upstate.

“CUP is a bit of a pariah because

people don’t understand it and assume that nothing can be done,” he says.

“We need to change that attitude and encourage clinicians to look for and treat the drivers of each patient’s disease as shown by DNA profiling.”

Ross reported on his research at the European Society of Medical Oncology last fall in Barcelona, a conference that attracted more than 28,000 attendees.

Two other Upstate professors presented work there, including Gennady Bratslavsky, MD, on the genetic landscape of two specific types of cancerous tissue, and Jeffrey Bogart, MD, on radiation treatment plans for patients with small cell lung cancer.

ShaRINg expeRTISe

Pathologist Jeffrey Ross, MD, who has expertise in genomic profiling, consults with other Upstate doctors and leads a monthly meeting in which he reviews and teaches about the ongoing care of individual patients at Upstate. He is shown with some laboratory samples.

PHOTO BY WILLIAM MUELLER

possible treatments: what’s the difference?

Resources

Targeted cancer therapies are drugs or other substances that block the growth and spread of cancer by interfering with specific molecules that are involved in the growth, progression and spread of cancer. They differ from chemotherapy in that:

Here are some places to learn more about the modern era of personalized cancer care:

• they act on specific molecular targets associated with cancer; most standard chemotherapies act on all rapidly dividing normal and cancerous cells.

• they are designed to block tumor cell proliferation; many chemotherapies were identified because they kill cells.

• most are available as pills; some chemotherapy medications are pills, but most are infusions.

Immunotherapy is a type of cancer treatment that helps your immune system fight cancer. It’s delivered through an infusion. There are several types, including immune checkpoint inhibitors, t-cell transfer therapy, monoclonal antibodies, treatment vaccines, immune system modulators and others. Different immunotherapies are given intravenously, in pills or capsules, in creams that are rubbed onto the skin, or directly into the bladder.

SOURCE: NATIONAL CANCER INSTITUTE

• The American Society of Clinical Oncology website at ASCO.org.

Under “research & guidelines,” look for “reports & studies,” and click on “Clinical Cancer Advances 2019.”

• The American Cancer Society website at Cancer.org. Use the search bar to type in “carcinoma of unknown primary.”

• The National Cancer Institute website at cancer.gov. Type “carcinoma of unknown primary” in the search field.

• Jeffrey Ross, MD, did a podcast for Upstate’s “HealthLink on Air.” Find it at Healthlinkonair.org by searching “Jeffrey Ross” or “immunotherapy.” upstate.edu/cancer l spring 2020 l C A N C E R C A R E

CC

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ShaRINg expeRTISe

uterus endometrium

3 facts about endometrial cancer How to catch it early, be cured, reduce your risk

BY AMBER SMITH

1

any vaginal bleeding after menopause — even if it’s only once, and even if it’s only a little bit — is abnormal.

It doesn’t always signal cancer, but “a woman can have a little bit of spotting for a couple of days and otherwise feel fine, and that’s the only sign that there’s a cancer developing,” explains Mary Cunningham, MD, the chief of gynecologic oncology at Upstate.

About one in 30 women will develop endometrial cancer in their lifetime, typically after menopause. It begins in the endometrium, the lining of the uterus where a baby grows.

She says it’s important to contact your health care provider for any bleeding after menopause and to realize there are other, non-cancer explanations for bleeding.

If you reach your mid- to late 50s without entering menopause, Cunningham says to discuss this with your health care provider. Also, women who are premenopausal can develop endometrial cancer. A sign can be irregular periods or very heavy bleeding.

2

The vast majority of women with endometrial cancer can be cured with surgery to remove the uterus.

Cunningham says other treatment options, including hormonal therapy and radiation therapy, may be used for young women who are planning to have children or for older women who cannot tolerate surgery.

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It’s not common, but endometrial cancer can recur in other parts of the body after surgery. Cunningham explains: “Cancers come back not because of the cells that we have removed and sent to the lab. Cancers come back because there are individual cells that are too small for us to see that have escaped from the initial area where they were located.”

Anyone who had cancer is at greater risk for developing a second cancer, so she reminds women who have been treated for endometrial cancer to remain vigilant and be screened regularly for colon cancer and breast cancer.

3

If you are 30 pounds overweight, your risk for developing endometrial cancer is tripled.

That’s because “the hormones that are in your body are converted into estrogen in fat cells. So the more fat cells you have, the more estrogens your body is producing,” says Cunningham.

“Endometrial cancers are often related to the level of estrogen in the body.”

She says maintaining a healthy weight is the best way to reduce your risk.

However, not all women with endometrial cancer are overweight.

Another factor that increases risk is an inherited gene that may cause endometrial cancer or colon cancer. If you have biological relatives with either of these cancers, particularly at young ages, be aware of your increased risk. CC

ShaRINg expeRTISe

Softening the blow of chemotherapy

BY AMBER SMITH

ome types of

S

chemotherapy deplete bone marrow

stem cells that are responsible for the body’s daily production of blood cells. That is debilitating for many patients, who may become so sick they require hospitalization. Their cancer treatment may be delayed or their medication dose lowered to a level that’s not effective — and that can have fatal consequences.

If scientists can come up with a way to help blood cells recover during chemotherapy, lives could be saved or improved and health care costs reduced.

Upstate’s William Kerr, PhD, thinks an enzyme in bloodforming stem cells could do the trick.

Kerr has spent much of his career studying the SHIP1 enzyme, which helps cells determine how to respond to

signals that come from outside the cell.

His initial work involved inhibiting this enzyme’s activity to enhance blood cell recovery after radiation exposure. A new study looks at inhibiting the activity of SHIP1 but after chemotherapy rather than radiation.

“If it works for radiation, we hypothesized that it would work for chemotherapy because chemotherapy and radiation are both essentially damaging the blood-forming stem cell capacity,” Kerr explains.

Kerr is a professor of microbiology and immunology, biochemistry and molecular biology and pediatrics at Upstate and a co-founder of Alterna Therapeutics, a private biotechnology company. Kerr, Alterna Therapeutics and a Syracuse University professor are the recent beneficiaries of a one-year, $225,000 grant from the National Institutes of Health to study how manipulating SHIP1 might help people better tolerate and recover from chemotherapy. Research supported by the grant will be conducted at the Central New York Biotech Accelerator at Upstate.

Alterna Therapeutics CEO Chris Meldrum notes that Kerr’s potential breakthrough could be especially helpful to patients who undergo chemotherapy or other treatments that severely deplete or suppress production of blood cells by the bone marrow. Such a discovery from Kerr’s lab may also have the potential to improve blood cell recovery following bone marrow transplant procedures. CC

upstate.edu/cancer l spring 2020 l C A N C E R C A R E

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LIvINg wITh CaNC eR

RECIPE

UNDERGRADUATE PROGRAMS Medical Imaging Sciences, Radiography (X-Ray), BS CT, BPS MRI, BPS Ultrasound, BS, BPS Medical Biotechnology, BS Medical Technology, BS Nursing, BS Radiation Therapy, BS, BPS Respiratory Therapy, BS

Fusilli with Broccoli and Deconstructed Pesto This recipe uses the ingredients found in pesto in a fresh, less muddled way.

Instead of blending herbs, nuts and cheese into a paste, here they are left in their individual states, so the flavors sing.

Cooking the garlic mellows it, and adding a little chicken broth replaces some of the oil traditionally used to make pesto.

Serves 4.

Ingredients

preparation

GRADUATE PROGRAMS

8 ounces fusilli or other shaped pasta

Behavior Analysis, MS

12 ounces small broccoli florets

Biomedical Sciences, MS, PhD Programs in Biochemistry & Molecular Biology, Cell & Developmental Biology, Microbiology & Immunology, Neuroscience, Pharmacology, Physiology

2 tablespoons olive oil

Prepare the fusilli according to the package directions for al dente (just firm). About 2 minutes before the pasta is ready, add the broccoli.

Reserve ¼ cup of the pasta water before draining.

Clinical Perfusion, MS Medical Preparation, MS

5 garlic cloves, minced ½ cup reduced-sodium chicken or vegetable broth ¾ cup chopped fresh basil ½ cup chopped fresh Italian parsley 2 tablespoons extra-virgin olive oil ¼ cup freshly grated Parmesan cheese

Medical Technology, MS

2 tablespoons pine nuts, toasted

Medicine, MD, MD/PhD, MD/MPH

Salt and freshly ground black pepper

Nursing, MS, Post Master’s Certificate Nursing, DNP

Nutritional Information

Physical Therapy, DPT

per serving

Physician Assistant, MS

400 calories

Public Health, MPH, Certificate

170 calories from fat

48 grams carbohydrates

18 grams total fat

12 grams protein

3 grams saturated fat

5 grams dietary fiber

zero grams trans fat

130 milligrams sodium

www.upstate.edu/students

4 grams polyunsaturated fat 11 grams monounsaturated fat

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4 grams sugar Less than 5 milligrams cholesterol

Meanwhile, in a large skillet over medium heat, add the olive oil. Sauté the garlic for 1 minute. Add the broth and bring to a boil for 3 to 5 minutes, or until reduced by half, stirring frequently. Reduce the heat, add the pasta and broccoli, and stir until coated with sauce. Add the basil and parsley and stir to combine.

Transfer to a bowl and drizzle with the extra-virgin olive oil (if too dry, add a tablespoon or so of reserved cooking liquid). Top with the cheese and pine nuts. Season with salt and pepper.

SOURCE: AMERICAN CANCER SOCIETY

MakINg a DIFFeReNC e

Global outreach She volunteers to improve pediatric cancer care

BY AMBER SMITH

Brooke Fraser with a cancer patient in Kenya.

PROVIDED PHOTO

L

eukemia is the most common childhood cancer all

“That was so life-changing,” she recalls.

over the world.

Fraser applied in 2015 to become a consultant for the international nonprofit Aslan Project. She spends her vacation time and her own money for meals and ground transportation, but Aslan covers her transportation and lodging. Fraser traveled to different areas of Ethiopia in 2016 and 2017, and to Kenya in 2019.

Whether it’s diagnosed and how it’s treated help determine which children survive. Those in low- and middle-income countries such as Ethiopia and Kenya are four times more likely to die of the disease than children in high-income countries, such as the United States.

Upstate nurse practitioner Brooke Fraser works to improve that disparity.

She spends her vacation time volunteering with a global organization whose mission is to improve pediatric cancer care in developing countries.

“I love it,” she says. “It has made me who I am.”

Fraser, a nurse with 18 years of experience in pediatric hematology/oncology before becoming a nurse practitioner, has always believed in service work.

She was an emergency medical technician, and before she had children she volunteered as a Girl Scout leader. Once her children were older, she wanted to serve abroad. Fraser brought one of her sons, who was 15 at the time, on a trip to help operate a medical clinic in a rural area of El Salvador. That was in 2014.

She describes her role: “I work as a consultant, evaluating the current state of a program, and as a teacher, teaching nurses how to care for children with cancer.” CC

upstate.edu/cancer l spring 2020 l C A N C E R C A R E

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MakINg a DI FFeReNC e

Helping families cope with a child’s grave illness

BY JIM HOWE

Mark MacDougall, Kara Fund president, is shown with Arianha Williams at the “Thriving Together: Starring Kids With Sickle Cell Family Event,” which included informational and fun activities and was held at Upstate in late 2019. The fund provided a photo booth as well as volunteers and other support.

PHOTO BY ROBERT MESCAVAGE

amilies with a seriously ill child face all sorts of

F

needs and stresses. A local nonprofit group is working to provide those families with a measure

“We’re not looking to supplant any charity, but to augment services or to help a group that is not being helped,” said Mark MacDougall, Kara’s father and the director and president of the Kara Fund.

of both material and emotional support.

The Kara Fund was started in memory of Kara MacDougall, a senior at East Syracuse Minoa High School who died in 2010. She was diagnosed with liver cancer while an exchange student in Australia and returned home for treatment — from both the pediatric oncology team at the newly opened Upstate Golisano Children’s Hospital and from CHOICES, the pediatric palliative care service directed by Upstate’s Irene Cherrick, MD. Kara did not live to see her class graduate.

The Kara Fund, incorporated in 2012, works to show families facing a child’s life-threatening illness — including cancer and other diseases — that their community cares about them. The aim is to follow in the spirit of Kara, whom family and friends describe as passionate about giving back to her community, as well as bright, energetic and athletic.

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Kara MacDougall’s painting of a flower represents the positive spirit of the charity named in her memory.

MakINg a DIFFeReNCe

The fund channels its help in three principal directions: l Comfort

care: For children in a hospital setting. The fund works with the Upstate Golisano Children’s Hospital, the Neonatal Intensive Care Unit at Crouse Hospital and CHOICES.

l Home

care: For children making the switch from a hospital back to their home. The fund works with Nascentia Health, an agency offering long-term care at home.

l Family

care: Direct support to families in crisis.

Specific programs Here are a few of the ways that families receive Kara Fund support: l Family

photo sessions when the child’s life expectancy is short, such as when an unborn child is not expected to survive. This can help with bonding and closure and provide a keepsake and is done through CHOICES.

l Also

through CHOICES, books and comfort items tailored to the individual relatives of a seriously ill child, including siblings and grandparents. Called the Pillar Project, it is designed to help everyone in the family cope with the child’s illness and death and the grief that follows.

l Oral

health care bags, with toothbrushes and other items, that are distributed by dentist Racquel

Vlassis, DDS, when she instructs young cancer patients about the need for keeping up dental care, which is important to help decrease their risk of infection. l Comfort/gift

bags for children with sickle cell disease, including heating pads, thermometers, water bottles and other items to help manage pain. Fund volunteers also helped at a recent event at Upstate for families of children with sickle cell disease, passing out treats and hosting a photo booth.

l Gasoline

cards, coffee cards and parking passes for Central New York parents whose baby is undergoing cardiac surgery at the Golisano Children’s Hospital in Rochester.

l Comfort/gift

bags and various supplies – anything from a gift card to a toy or a blanket – for seriously ill children being cared for at home or in a hospital setting.

“We supply a lot of gift cards,” MacDougall said. The fund raises about a hundred thousand dollars a year, which pays for those cards and other supplies.

The group’s board contains people with a good mix of skills to help plan and carry out projects, says MacDougall. Some of the board members attended school and played soccer with Kara, such as Nicole Hurley and Allyson Rossi, who hope to keep the organization going well into the future.

Kara MacDougall, who died of cancer in 2010, inspired the fund.

PROVIDED PHOTO

“Reflecting on the difficulties the MacDougalls went through and continue to go through, I think we always want to know that others are around us and there for us,” said Hurley, the fund’s vice president. “It’s such an amazing feeling to be there for those in need; it’s priceless. Through the Kara Fund, we can assure families that, whatever the outcome of their child’s illness, they will always have another family here for them.”

Rossi, the fund’s treasurer, recalls that Kara was “very energetic, strongwilled and definitely was huge into giving back. We’re doing something she would be really proud of.” Both Hurley and Rossi noted that they and other board members are always trying to spread the word about the fund, in hopes they can find and help more people with unmet needs.

Learn more at thekarafund.org

CC

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6 a.m. & 9 p.m.

SUNDAYS ON WRVO

Listen anytime on www.healthlinkonair.org or find us through a podcast search for “HealthLink on Air” upstate.edu/cancer l spring 2020 l C A N C E R C A R E

21

Foundation

Impacting patient care, education, research, and community health and well-being through charitable giving.

Coming full circle….

from pediatric cancer patient to top OttoTHON fundraiser Syracuse University InclusiveU student Andrew Benbenek is a top fundraiser for OttoTHON, Syracuse University’s annual dance marathon that raises money for the Upstate Golisano Children’s Hospital. What motivates Benbenek is passion, and the medical care that began when he was 8 years old.

Headaches and other nondescript symptoms were the reasons Benbenek’s mother, Mimi, scheduled an appointment with his pediatrician, who ordered a computed tomography scan.

What followed floored his mother, a registered nurse.

“I was told to have Andrew at Upstate University Hospital by 3 p.m. for an MRI (magnetic resonance imaging) and appointment with a pediatric oncologist. My pediatrician thought he had a brain tumor,” recalled Benbenek’s mother.

“I was shocked. As a nurse, I thought that there were many possible diagnoses.”

What his mother hoped to be a misdiagnosis ended up being six weeks in the hospital for Benbenek, most of which was spent in the intensive care unit following surgery to remove a medulloblastoma, a brain tumor in the cerebellum. “The doctors, nurses and child life staff were amazing,” said his mother. “They provided the best possible care and even decorated his room. They did everything possible to make Andrew feel like a normal kid.”

After Benbenek was discharged from the hospital, he started six weeks of radiation.

Then came 18 months of chemotherapy, and many, many medical appointments and lab visits. About every two months he was hospitalized at Upstate.

Benbenek developed cognitive, fine motor and balance issues related to his treatments. “There was concern with his vision. But, thankfully his eyesight was OK and his brain compensated for the losses,” said his mother.

School was difficult, but Benbenek never got discouraged. Administrators and teachers helped him scholastically and inclusively.

“Andrew is hardworking and I think some divine intervention has helped him accept circumstances,” said his mother. “He received the optimist award in sixth grade and wanted a Regents diploma from high school. It was very difficult, 22

C A N C E R C A R E l spring 2020 l upstate.edu/cancer

but he worked hard for it and got his Regents when he graduated.”

After receiving an associate degree from Onondaga Community College, Benbenek was unsure of his next steps. After some searching, he enrolled in InclusiveU at Syracuse University, and it has been life-changing.

Mentors have helped Benenek, now 28, get involved in organizations on campus, and he is especially fond of and connected to OttoTHON. When Benbenek went to a meeting about OttoTHON, he was asked to share something about himself.

“I was a patient at Upstate Golisano Children’s Hospital, and they cured me,” he said simply.

The next day, the mentor asked him about his story.

“Having gone through cancer, I can appreciate what the Upstate Golisano Children’s Hospital has done for me. Even now, I can go to them with any questions and they are there for me,” Benbenek said. “I appreciate how my oncology doctors, like Dr. Irene Cherrick and Dr. Jody Sima, work together for the good of their patients.”

Benbenek was asked to speak at OttoTHON about his experience. “I like OttoTHON for many reasons. I can show kids who are going through a hard time that they don’t need to be afraid; things will get better. I also want to raise money so the kids at the hospital have what they need.

I like to help.”

Toni Gary, assistant vice president at the Upstate Foundation, is the liaison with the SU students involved in OttoTHON. “Because I met Andrew when he was a child first being treated at Upstate, it was especially heartwarming to see his commitment to OttoTHON, and to see him coming full circle to help kids where he was once treated.”

Are you grateful?

A gift of gratitude is a meaningful way to express appreciation to special caregivers and help patients during their time of great need. To donate to the Upstate Golisano Children’s Hospital or the Golisano Center for Special Needs, contact the Upstate Foundation at 315-464-4416 or go to www.upstatefoundation.org/donate

Andrew today and at age 8

MakINg a DI FFeReNC e

A peek inside the Upstate Golisano Children’s Hospital

Nine-month-old Maryangeliz Rodriguez, of Syracuse met Snow White and Cinderella during her brother Michael’s appointment at Upstate’s Waters Center for Children’s Cancer and Blood Disorders. The Disney princesses are from the Moment of Magic Foundation. Michael went home with a free book after his appointment.

PHOTO BY WILLIAM MUELLER

Griffin’s Guardians raised more than $1,500 to provide “Joyride Therapy” for youngsters in treatment at the Upstate Golisano Children’s Hospital. The program puts pediatric patients in the driver’s seat of a shiny red car, so they can cruise to their treatment while maintaining a sense of independence, control and freedom. Victor Gloo, 3, of Baldwinsville, was one of the first patients to drive the car. His parents, Aaron and Veronica Gloo, stand back while nurse Sarah Holzhauer PHOTO BY EMILY KULKUS shows him how to work the car.

CAMPAIGN FOR THE NEW GOLISANO CENTER FOR SPECIAL NEEDS

If your pediatrician suspects that your child may have autism, there is a six-month wait for evaluation at Upstate’s Diagnostic Evaluation and Treatment Services. Worse, if your child has autism with severe behavior problems, the wait to be seen in Upstate’s Family Behavior Analysis Program is 100 kids long – or two to three years.

The new Golisano Center for Special Needs is poised to meet the challenges that children with intellectual and developmental disabilities (I/DD) and their families are facing.

HOW YOU CAN HELP

• Center for Development, Behavior and Genetics • Inclusive Fitness and Adaptive Design Program • Family Behavior Analysis Program • Behavior Analysis Studies, MS Program • Dual-Diagnosis Inpatient Unit* • Behavior Analysis Murine Lab • Diagnostic Evaluation and Treatment Services *in development

Help us provide the Golisano Center for Special Needs with the necessary resources to: • increase the number of children served; • decrease wait times; • increase programming; and • consolidate vital services and areas of collaboration.

For more information, including how to make a gift, visit our website at www.UpstateFoundation.org Impacting patient care, education, research, and community health and well-being through charitable giving. upstate.edu/cancer l spring 2020 l C A N C E R C A R E

23

750 East Adams Street l Syracuse, NY 13210

UPClose Microvascular surgery involves transplanting tissue from one part of the body to another, which requires tiny blood vessels to be reconnected.

Surgeons such as Jesse Ryan, MD, an assistant professor in the department of otolaryngology – head and neck surgery, need to make sure the blood vessels are connected properly and flowing after an operation.

A flow coupler (made by Synovis MCA) is a tiny implant that can be used to reconnect small veins during microvascular surgery. The implant both connects two veins together and monitors blood flow through the vein using a tiny ultrasonic Doppler probe. A small box that sits at the patient’s bedside alerts nurses if a problem develops with blood flow in the small vein during recovery. This may allow a problem, such as a blood clot, to be detected quickly so that the surgery can be salvaged.

The Doppler wire is removed after a few days of close monitoring.

Ryan says “the flow coupler is an innovative technology that has helped us take better care of our patients by giving us a tool to monitor the transplanted tissue more closely following a large cancer surgery.” CC

Close-up of the device that is used to connect two veins.

PHOTOS BY WILLIAM MUELLER

20.052022028.8mELsk

Jesse Ryan, MD