Cancer Care magazine, spring 2022

care

CANCER

for anyone touched by cancer

s

Spring 2022 A rarity: breast cancer during pregnancy Bladder replacement options 3 questions about genetic testing What to expect from chemotherapy Reducing financial stress

Brought to you by the

YOUR GUIDE

At your service: The Upstate Outpatient Pharmacy provides services not typically found at retail pharmacies.

Anyone who takes a variety of medications at different times of day may appreciate pouch packaging. This service places pills into small packets, labeled with the date and time they are to be taken. “Everything that needs to be taken at that specific time of day is prepacked. The guesswork is gone,” explains pharmacist Emily Adamy, who manages the pharmacy on West Seneca Turnpike, across the street from Upstate Community Hospital.

A second location is inside the main entrance of Upstate University Hospital in downtown Syracuse.

Both pharmacies are open to the public from 8 a.m. to 6 p.m. weekdays. The downtown location is also open 9 a.m. to 2 p.m. Saturdays and Sundays.

Planning for the outpatient pharmacy included coming up with

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Pharmacy caters to outpatients

solutions for patients’ most common complaints about pharmacies, says pharmacist Eric Balotin. He says it was important that the pharmacies are well stocked with a variety of medications for prescriptions written

by Upstate providers. He has a team of staff who can obtain prescription authorizations from health insurers on behalf of providers. He also has medication assistance coordinators whose sole job is to help patients find ways to afford their medications.

Balotin is director of the Upstate Outpatient Pharmacy.

The pharmacists help minimize adverse effects by monitoring which drug therapies a patient has been prescribed. They teach patients and their loved ones about how to take medications and the potential side effects. And they offer basic compounding for patients who need a special formulation, a reduced dose of medication or, for example, an oral

suspension of a medication that is not sold in liquid form.

Balotin describes one of the features patients like most. “We built a very strong ‘meds-to-beds’ program.

When a patient is in the hospital and being discharged, we deliver their medications to the bedside at the time of discharge, so when they leave the hospital, they can go right home. They don’t have to make any additional stops. They go home with everything that they need.”

And when it’s time for a refill, or for any outpatient pharmacy-related questions, they just call 315-464-3784 (DRUG). The pharmacy ships medications via United Parcel Service or through a courier service at no additional charge.

Patients who have old medications at home can safely dispose of them using disposal boxes at either location. CC

CANCER

care

Spring 2022

CONTENTS

On the cover: Nurse practitioner Davia Moss works in adolescent medicine at Upstate.

CARING FOR PATIENTS

See her story, page 4.

PHOTO BY SUSAN KAHN

This pharmacy does more than fill prescriptions

page 2

A rarity: Cancer during pregnancy

page 4

Surgery got rid of his prostate cancer

page 6

Deciding each day will be good

page 8

A hoodie made for infusions

back cover

SHARING EXPERTISE A swollen testicle warrants evaluation

page 11

3 questions about genetic testing

page 12

The stroma and its role in pancreatic cancer page 14 When cancer means bladder removal

page 15

What to expect from chemotherapy

page 16

More precise lumpectomies

page 18

RESEARCHING FOR ANSWERS Predicting breast cancer spread

Share with a friend!

page 19

LIVING WITH CANCER

The Upstate Cancer Center provides the magazine Cancer Care for anyone touched by cancer.

Don’t panic about finances

page 21

A dietitian recommends these cookbooks

page 22

Send subscription requests or suggestions to magazine@upstate.edu. The magazine is free of charge.

How cancer psychologists can help

page 23

Or subscribe online, using the QR code.

UPSTATE CANCER CENTER

CANCER CARE Leah Caldwell Assistant Vice President, Marketing & University Communications

EXECUTIVE EDITOR

MANAGING EDITOR

WRITERS DESIGNER

Amber Smith 315-802-9152 or smithamb@upstate.edu

Jim Howe, Emily Kulkus Jeanne Albanese, Amber Smith Rebecca Janowski

DIRECTOR (INTERIM)

Thomas VanderMeer, MD

DEPUTY DIRECTOR

Gennady Bratslavsky, MD

ASSOCIATE DIRECTOR FOR Teresa Gentile, MD, PhD CLINICAL RESEARCH ASSOCIATE DIRECTOR FOR BASIC AND TRANSLATIONAL Leszek Kotula, MD, PhD RESEARCH ASSOCIATE DIRECTOR FOR COMMUNITY OUTREACH ASSOCIATE ADMINISTRATOR

Leslie J. Kohman, MD Richard J. Kilburg, MBA

The Upstate Cancer Center is part of Upstate Medical University in Syracuse, New York, 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.

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CARING FOR PATIENTS

Her breast cancer diagnosis came four days before the birth of her son 6 things to know about breast cancer during pregnancy:

1 2 3 4 5 6 4

It’s rare, appearing in about 1 in 3,000 pregnancies.

In the long run, pregnancy decreases a woman's overall lifetime risk of developing breast cancer.

However, during pregnancy, and shortly after, a woman's risk of breast cancer temporarily increases, says Jayne Charlamb, MD, who specializes in breast care and breastfeeding medicine.

Breasts change, naturally, during pregnancy. They grow bigger, may be tender or become firm, or may leak colostrum, the first breast milk produced after childbirth. If changes affect only one breast, that’s a red flag worth mentioning to your obstetrician.

Diagnosis of breast cancer during pregnancy and lactation is often delayed because the usual symptoms are not recognized as abnormal or because healthcare providers wrongly assume evaluation is not possible during pregnancy. It is always important to seek thorough evaluation of any breast changes that seem unusual to you.

Breastfeeding is possible – though likely challenging – for new mothers who are in treatment for breast cancer.

The baby is not at risk of catching cancer from the mother.

C A N C E R C A R E l spring 2022 l upstate.edu/cancer

BY AMBER SMITH

Family nurse practitioner Davia Moss was taking off her sports bra when she noticed a lump in her breast. She was 34 and pregnant with her third child.

Her obstetrician assured Moss it was probably nothing but sent her for a biopsy, just to be sure.

“When I felt the lump, I thought that it was probably pregnancy related, either a clogged duct or just some normal cystic changes. I was very surprised,” Moss says. “Even two years later, I still am a little bit surprised.”

Cancer in pregnancy Cancer during pregnancy is uncommon. When it happens, it can be a challenge to diagnose and treat, says Jayne Charlamb, MD, an Upstate doctor of internal medicine who specializes in breast care and treating women at high risk for breast cancer.

Moss sought guidance from Charlamb – whom she had previously heard lecture on breastfeeding – after a breast surgeon advised against latching her new baby. Latching is how a baby attaches to its mother’s breast to breastfeed.

“Breastfeeding has been a huge passion of mine,” says Moss, who breastfed her first two children – Eliana Adcock, now 7, and Cason Adcock, now 5 – until they were 2.

She says her diagnosis didn’t sink in until she realized it might mean not breastfeeding her third.

Charlamb believes any new mother with breast cancer should be able to consider the risks and benefits of breastfeeding. “I don’t think it’s something that every mom, or even most moms, would want to do. It’s a lot of work,” she says. “It takes a dedicated mom. It takes a very flexible baby. Davia was sort of set up to succeed. She was an

CARING FOR PATIENTS

Can surgery reduce ovarian cancer risk?

Nurse practitioner Davia Moss with her husband, Patrick Adcock, MD, and their children, Asher, Eliana and Cason.

PHOTO BY SUSAN KAHN

experienced breastfeeding mom. She’d done this before. It was something that was highly important to her.

And, fortunately, this baby is the most flexible baby I’ve met. That was very helpful.”

Breastfeeding success Moss regularly had to pump and discard her milk during the weeks she had chemotherapy, but she was able to breastfeed her son for a few days every couple of weeks when the drugs were out of her system. She clung to those moments. And she drew support from a group of women she found through social media who faced, or were facing, cancer during pregnancy. Asher Adcock is now a healthy 2-year-old.

Charlamb advises any woman diagnosed with cancer during pregnancy to take a deep breath first.

Then, compare treatment options as they apply to her situation.

“We try to time things during pregnancy. There are times when it’s safer to do surgery, during the second or third trimester, rather than early on, but we always need to weigh the risk and benefits,” she says. Side effects have to be considered even though the placenta, the organ that forms in the uterus as the baby grows, does a good job of protecting the baby.

Evaluation and treatment of women for breast cancer is pretty much the same, regardless of whether they are pregnant or lactating, Charlamb says.

“When you have a woman who comes to you with a breast complaint, who happens to be lactating or happens to be pregnant, you evaluate her in almost exactly the same way, with the same urgency that you would if she were not lactating or pregnant. It’s perfectly safe to do a mammogram, to do a sonogram and to do a biopsy.”

Charlamb says Moss’s obstetrician did everything right. She sent Moss for

Jayne Charlamb, MD

medical images immediately, followed by a biopsy the next day. As the results came in, quickly a team of specialists was assembled, including from radiology, pathology, oncology, pediatrics, genetics and others. Her breast cancer had spread into her lymphatic system, and it was fed by estrogen.

Exploring genetics Moss – who works in adolescent medicine at Upstate – delivered her baby four days after her diagnosis.

Ten days later, she and her husband, Patrick Adcock, MD, traveled to hear a second opinion. They returned to Syracuse, and Moss had a port placed beneath her skin, which allows easy access for administering IV drugs.

Chemotherapy began before Asher was a month old. She had eight rounds of chemo, every other week, for four months.

After learning she carried the BRCA2 gene, which significantly increases her risk of breast and ovarian cancer, Moss had one breast removed to reduce her risk in April 2020. She kept the other, so she could continue nursing Asher until he was 1. That’s when she started the medication tamoxifen, which is used to treat her type of breast cancer.

She had her second breast removed in November 2020, along with her fallopian tubes. “There is growing evidence that this may lower my risk of ovarian cancer,” Moss explains. When she turns 40, she’ll consider whether to have her ovaries removed as well. CC

Doctors have known since the mid1990s that BRCA genes increase the risk of cancers including breast and ovarian cancers, says Rinki Agarwal, MD, medical director of the Upstate Cancer Center’s gynecologic oncology program and its genetics program. Removing both the ovaries and fallopian tubes of women with this gene can significantly reduce that risk.

Researchers searching for a way to detect early signs of ovarian cancer have not spotted precursor lesions in the ovaries. However, they have found precursor lesions in fallopian tubes, she says. “That may be where it starts.”

Fallopian tubes preserve fertility. But in addition to their role in fertility, the ovaries produce hormones that impact a woman’s overall health, including mood, sleep, sexual function, cholesterol management, bone health and cardiac function, Agarwal explains.

So, preserving a woman’s ovaries would be ideal.

A study supported by the National Cancer Institute is underway – involving some patients from Upstate – to determine whether removing just the fallopian tubes would be adequate in reducing the risk of ovarian cancer.

Women at high risk of ovarian cancer can learn about the “SalpingoOophorectomy to Reduce the Risk of Ovarian Cancer” study by calling 315-464-8200. Participants must be between age 35 and 50, with the BRCA1 mutation and fallopian tubes intact. Agarwal says as part of the study, women choose between surgery to remove only their fallopian tubes (salpingectomy), or surgery to remove both the fallopian tubes and ovaries (salpingo-oophorectomy).

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CARING FOR PATIENTS

Surgery successfully treats his prostate cancer

BY JIM HOWE

A series of medical tests provided Donald Gregory of Camillus with good news and bad news.

At an annual physical in 2021, Gregory, 69, found out he had an elevated level of PSA, or prostatespecific antigen, indicating he might have prostate cancer. He underwent a biopsy, where tissue samples are taken from the prostate gland, a walnut-sized gland that surrounds the neck of a man's bladder and urethra, the tube that carries urine from the bladder.

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CARING FOR PATIENTS

Donald Gregory says of his battle with prostate cancer: “I survived it. It wasn’t easy. It was uncomfortable, but it gets better with time.” He is shown in the kitchen of his Camillus home.

A new option for hormonal therapy The Food and Drug Administration approved a new type of hormonal therapy for men with advanced prostate cancer in December 2020. Instead of traveling to a medical office to obtain an injection of a medication to suppress testosterone, men could swallow a tablet.

PHOTO BY SUSAN KAHN

Gennady Bratslavsky, MD

That biopsy confirmed he had cancer. That was the bad news.

The good news: it was caught early enough that it could be treated.

Among American men, prostate cancer is the second most common cancer, after skin cancer, and is the second leading cause of cancer death, after lung cancer. Most prostate cancers are found in men over the age of 65.

Choosing an operation Facing the choice of radiation or surgery for treatment, Gregory chose surgery, which led him to Gennady Bratslavsky MD, the chief of urology at Upstate.

“I liked him right off. He explained the differences between surgery and radiation,” Gregory recalls of his meeting with Bratslavsky.

Gregory underwent a roboticassisted laparoscopic radical prostatectomy. This means the surgeon uses robotic arms as he operates to remove the entire prostate gland and some surrounding tissue.

Laparoscopic refers to using a series of tiny cuts instead of a large cut.

He was warned of the possible consequences of this surgery, such as erectile dysfunction and incontinence, but told Bratslavsky, “ ‘Doc, I’m not a kid anymore; I’m more concerned with getting rid of the cancer.’

“He couldn’t be nicer,” Gregory says of the urologist, also praising everyone assisting in the operation and his care.

A smooth recovery After the surgery, he had to urinate through a catheter for about a week, and it took about six to eight weeks before he was back to his normal daily routine.

A later blood test showed his PSA had dropped from above 5 (4 is often considered the upper limit of safety) to zero, confirmed by another test six months after that.

Bratslavsky, in a telemedicine visit because of the pandemic, gave Gregory a thumbs-up sign, then formed a zero with his fingers and said, “ ‘We got it all. We got all the cancer,’ ” Gregory recalls. “I said, ‘Thank God I went through this and got good results.’ ” He will be checked again down the road.

What would Gregory advise other men facing prostate cancer?

“I survived it. It wasn’t easy. It was uncomfortable, but it gets better with time.” CC

The medication, relugolix, “has been a significant improvement, especially during the COVID-19 pandemic era,” says urologic oncologist Hanan Goldberg, MD. “We tried to limit patients coming to the hospital or the clinic because cancer patients are more at risk of COVID-19.”

Androgen deprivation therapy – to suppress male hormones – may be prescribed to slow the growth of prostate cancer cells, and it has been shown to extend the lives of men with advanced prostate cancer. The oral and injectable medications are likely to produce the same side effects: hot flashes, fatigue, mood swings and others. Goldberg tells his patients it’s similar to menopause.

He notes one important difference with the oral medication. A study published in the New England Journal of Medicine found a 54 percent lower risk of major cardiovascular side effects in men who took relugolix, compared with those who had injections. “For patients who have prostate cancer but also have cardiovascular issues going on, this drug is probably preferable.”

A main advantage of relugolix, Goldberg says, “is the higher percentage of patients who recover their testosterone to normal range 90 days after stopping treatment, compared to those treated with injections (54% vs. 3%).” upstate.edu/cancer l spring 2022 l C A N C E R C A R E

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CARING FOR PATIENTS

Pastor Sue Crawson-Brizzolara of Harpursville praises her health care providers. "They've all been wonderful.

I can't brag them up enough."

PHOTO BY SUSAN KAHN

Her decision: for each day to be good

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CARING FOR PATIENTS

BY AMBER SMITH

Sue Crawson-Brizzolara cried until she was a puddle on the floor. The Methodist pastor had lung cancer, which had spread to her brain. Her survival odds were not good. She might have two years. Most people with her cancer died within months. She broke down, sobbing.

Cancer entered her life as she was busy with the last semester of her master’s program in 2015. CrawsonBrizzolara was tired, maybe more than usual. One night as she ate rotisserie chicken, she choked on a bone. Later, when she coughed up blood, she assumed it was related to the chicken bone. When she coughed up blood again, her husband, Dan, insisted she see her nurse practitioner.

“It was a week before graduation, and I felt like the rug was pulled right out from under me,” CrawsonBrizzolara remembers.

She had an aggressive lung cancer and needed specialized cancer care.

Finding her team She came to the Upstate Cancer Center – and found a team of health care providers.

“The first thing they said to me when I went for the evaluation was that ‘We have a team, and you’re part of that team.’ They listen to me as the patient, and I’m responsible for my care, too,” Crawson-Brizzolara says.

She loves how her doctors communicate. When she sees radiation oncologist Seung Shin Hahn, MD, and nurse practitioner Kathryn Spinek, they are aware of what her other providers

from the cancer center are doing for treatment and the concerns she’s discussed with her nutritionist. And, they inform her primary medical provider – nurse practitioner Julie Barnes of Windsor, a few miles from Crawson-Brizzolara’s home in Harpursville, northeast of Binghamton.

we can,” he said. “But Sue, go live your life. Live your days and enjoy them, because you don’t know whether it’s coming back.’ ” It helped her realize that, cancer or no cancer, no one knows how long they will live.

“If you only have whatever number of days, even if it’s 700-something, how do you want to live those days? You can lay here every day and cry. That’s your choice,” she says. “I asked myself, how do I want those days to play out?

I decided I wanted to leave behind good memories. And if I’ve only got 60 days or 760 days, I wanted each day to be good.”

Because lung cancer often spreads to the brain, at her first appointment, medical oncologist Adham Jurdi, MD, sent Crawson-Brizzolara for a brain scan, which showed a tumor. She then underwent gamma knife radiation to remove it, under the supervision of Walter Hall, MD. Then she had chemotherapy and 33 radiation treatments to treat the lung cancer, a non-small-cell squamous cell carcinoma.

Showing support When she told her family, each member was supportive in his or her own way. Her husband cared for her daily and kept the household going.

Her mother nurtured her. Daughters Traci and Becky called, texted and sent cards weekly. Her son, Brian provided motivational messages and videos twice a week without fail. They all knew that only 17 percent of the people with her diagnosis would live another five years.

“Mom, somebody has to be in that 17 percent,” her son told her, “and it may as well be you.”

That, plus words of encouragement from her health care team, helped pull Crawson-Brizzolara off the floor.

She remembers being stunned when Jurdi told her the cancer could return anywhere in her body, at any time. “We will treat your cancer as aggressively as

A wellness plan Crawson-Brizzolara created a wellness plan that said she would get up and take a shower and make her bed every day – even if she was just going to climb back in bed afterward – and to “put some goodness into the air” every day. Some days when she was feeling ill from chemo, her goodness was prayers for other people.

Her trips to Syracuse from Harpursville took about 90 minutes.

Crawson-Brizzolara says her family was impressed not only with her doctors but with nurses, technicians and janitors.

“Everybody up there goes the extra mile.” One early morning as her husband sat in the waiting room, a worker from environmental services approached: “You look tired,” he said.

“Can I get you a pillow and warm blanket?” Another time, a nurse walked her husband and her mother down a maze of hallways to the hospital cafeteria – and gave them a phone

continued on page 10

(left to right)

Jeffrey Bogart, MD; Stephen Graziano, MD; Seung Shin Hahn, MD; Walter Hall, MD; Adham Jurdi, MD; Richard Kelley, MD; Mark Marzouk, MD; nurse practitioners, Kathryn Spinek and Ibrahim Thabet. upstate.edu/cancer l spring 2022 l C A N C E R C A R E

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CARING FOR PATIENTS

She wanted each day to be good continued from page 9 number to call when they were ready to be escorted back to the cancer center.

Crawson-Brizzolara’s lung cancer treatment concluded in September 2015. Since then, every three months, she returns for checkups. Crawson-Brizzolara says many family members had cancer, so she knows she is at high risk herself. She’s full of praise for her caregivers at Upstate. “I know I could die. And if I do, I’m not going to blame them. I’m going to thank them for these extra years of life.”

In 2018, she felt a lump in her throat. It turned out to be a second cancer, this one in one of her tonsils. Surgery was not an option, so she faced chemotherapy and radiation, again.

At one of her appointments at the Upstate Cancer Center, she mentioned to nurse practitioner Ibrahim Thabet that the next day was the anniversary of the end of her lung cancer treatments.

Becoming a survivor “That’s how survivors talk. They talk about milestones and reaching them,” Thabet told her. “You’re talking like a survivor.”

Crawson-Brizzolara became a survivor. She credits that to the medical care she receives from Barnes and the specialists at the cancer center, along with encouragement and love from family and friends, and spiritual and prayer support from many others.

SEE YOU AT THE

ZOO!

UPSTATE’S 25TH ANNUAL NATIONAL CANCER SURVIVORS DAY CELEBRATION

Two years later, in 2021, she felt something in her neck again. The cancer from her tonsil had returned, to a lymph node in her throat. Otolaryngologist Mark Marzouk, MD, who specializes in head and neck cancers, made plans to surgically remove the lymph node.

Sunday, June 5 5:30 - 8:30 p.m.

“The cancer had broken out of the lymph node with tentacles,” Crawson-Brizzolara explains. “One wrapped around the nerve going to the tongue, and the other around my jugular vein. They had to cut both of them to get the cancer out.” The surgery altered her voice.

Cancer survivors of all ages are invited to join us for a bite to eat, music and special activities throughout the Rosamond Gifford Zoo in Syracuse. This event is free for cancer survivors and and up to four guests.

During her hospital stay, caregivers pointed out that since treatment concluded more than six years prior, she was considered cured of lung cancer. She reminded Hahn, the radiation oncologist, that in 2015 only 17 percent of people with her type of lung cancer would survive five years. He explained that survival rates had improved.

Now 50 percent of people survive five years.

Roam the zoo to enjoy: DJ music, food stations, live animal demonstrations, photo booths and entertainment.

Thanks to financial donations that allow doctors to conduct research, Crawson-Brizzolara says proudly that “progress is being made.” CC

RSVP at www.upstate.edu/ncsd

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Space is limited and reservations will be accepted on a first-come, first-served basis.

Follow us on social media for event updates.

SHARING EXPERTISE

A swollen testicle warrants evaluation

Testicular cancer has a high cure rate when it is diagnosed and treated early.

One of its hallmark symptoms is painless testicular swelling.

Doctors from Upstate wrote in the medical journal Cureus about the case of a 24-yearold man who came to Upstate University Hospital because he was coughing up blood.

Imaging scans revealed multiple lesions in his lungs and abdomen that doctors believed to be cancer, but they were not sure in which organ the cancer began. The man mentioned that a few weeks prior, his right testicle had become swollen. He thought it was the result of an intense workout. The swelling resolved on its own, and he thought nothing more of it.

Blood tests indicated testicular cancer.

No tumors were found in the man’s testicles, though, leading doctors to believe he had an aggressive form of testicular cancer. The tumor burned out or disappeared on its own, but not before spreading cancer cells outside of the organ. This happens, rarely. Doctors note fewer than 80 documented cases in the last century.

Two days after the man was admitted to the hospital, he developed a severe headache,

and he couldn’t stop vomiting. Medical images of his brain showed multiple spots believed to be cancer.

Symptoms requiring attention

The man received chemotherapy and radiation therapy. Doctors were considering a stem cell transplant, but the man’s disease progressed rapidly. He suffered severe bleeding in his lungs and died about eight months after his diagnosis.

These symptoms are more likely to be caused by something other than testicular cancer, including an infection or injury. Still, the American Cancer Society advises men to seek medical attention if they experience:

The doctors involved in the man’s care acknowledge an earlier diagnosis may not have made a difference for him, since the type of cancer he had was so aggressive. The team included oncologists Ajeet Gajra, MD, and Muhammad Naqvi, MD, and fellows Wajihuddin Syed, MD, and Maria Fariduddin, MBBS. They wrote about this case – with the blessing of the patient’s father – in hopes of reminding young men of the risk of ignoring painless testicular swellings.

“Get timely evaluations even for seemingly trivial testicular swellings so that these tumors are detected early and treated appropriately to improve the odds of cure and survival,” the article’s authors recommend. CC

• Painless swelling of the testicle • A lump in the testicle • Testicular firmness • Scrotal heaviness • Aching in the lower belly or scrotum • Enlargement of breast tissue

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SHARING EXPERTISE

3

QUESTIONS FOR GENETIC COUNSELOR JASON SHANDLER

Jason Shandler is a genetic counselor at the Upstate Cancer Center.

1

What’s the difference between somatic mutations and germline mutations?

All cancer is genetic in the sense that it is caused by mutations in genes, which result in cells growing out of control. However, those mutations can either be acquired during your lifetime or inherited from your mother or father. If it is the latter, there is a risk to pass the mutation on to your children.

When we perform genetic testing on tumor cells, the test is determining the presence or absence of an acquired mutation, which is a change identified only in that cancer cell. This testing, also known as somatic testing, is often done to guide treatment options; perhaps a specific treatment or drug has been developed that can target the specific mutation found in the patient’s tumor cells. A somatic mutation may arise due to an exposure or a mistake during replication of the genetic information, but it is unlikely to be present in other tissues, such as an egg or sperm.

Mutations present in all of your cells, including egg or sperm, are

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considered germline mutations. If a mutation is first identified on somatic testing, we must then conduct germline testing to determine if the mutation is present in all of your cells or just in the tumor cells. If the mutation is present in other tissues, it would be considered a germline mutation, and these may be passed on to the next generation.

It is important to make the distinction between a mutation that was acquired (somatic) or inherited (germline) for the purposes of treatment decisions and future cancer screenings in that patient and other family members. Identification of a somatic mutation is one reason someone with cancer may seek care from a genetic counselor for hereditary testing.

2

What are the risks of having a germline mutation?

Many of the germline mutations we identify do influence cancer risk.

However, each mutation has a different overall risk. Some genes are on the lower end of the risk spectrum, and we are learning a great deal about these as more research is conducted. Other

SHARING EXPERTISE

genes have risks that are better defined, as they have been studied longer. It is important to note that having a mutation does not guarantee a patient will develop a cancer; it is never a 100% risk. We always talk about a sliding scale of risk, where everyone starts with some degree of risk, and we move that up or down, depending on what is identified on genetic testing.

Once someone in the family has been found to carry a germline mutation, all of their first-degree relatives qualify for genetic testing; this includes siblings, children and parents. Each of these relatives has a 50% chance to carry the mutation. If a first-degree relative tests negative for the known familial mutation, then that relative's children cannot inherit the mutation either.

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Who is a candidate for genetic testing?

Genetic testing has changed dramatically in the past 10 to 15 years.

We used to only be able to test for a few genes. We are now testing for upwards of 80 genes. While most cancers are not hereditary, there are some “red flags.”

The most important red flag we

encounter is age. A young age of onset, such as breast cancer under the age of 45 or colon cancer under the age of 50, is one of the most common indications for genetic counseling.

Another red flag is the presence of multiple cancers in one person. There may be an underlying reason why a single individual has developed cancers in multiple locations; perhaps a mutation was present in all of their cells that contributed to the development of seemingly unrelated cancers.

Other times, we see family histories with cancers over multiple generations.

For instance, maybe there was cancer in a grandparent’s generation, and then in the parent’s generation, and now into the patient’s generation. If a person has three or more family members on one side of the family with a breast cancer or related cancer, like ovarian, prostate or pancreatic cancer, then they qualify for genetic testing, as there may be an inherited mutation predisposing the family to cancer beyond random chance.

You can inherit genetic predispositions to cancers from your mother or father, so knowing the cancer history on both sides of the

family is equally important. A crucial part of our assessment is to draw a pedigree, or family tree, with information from both the maternal and paternal families. Our patients are sent questionnaires prior to meeting with us, so they have an opportunity to list their personal and family history, including the type(s) of cancer and age at diagnosis. Many patients also use this opportunity to start a conversation with other family members about their cancer history and acquire additional information that may prove useful during our sessions.

Everyone approaches genetic testing in their own way, and we all weigh and react to risk factors and results differently. Ultimately, there is no right or wrong way to pursue genetic testing, and each individual makes their own independent decision. For some, testing positive for a mutation can be a constructive experience, as it helps explain why they have developed their cancer. To these patients, testing may provide reason and understanding. It may also provide immediate benefits for treatment and surgical decisions or guide screening for cancers in other organs. CC upstate.edu/cancer l spring 2022 l C A N C E R C A R E

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SHARING EXPERTISE

Have you heard of the stroma?

It’s one reason why pancreatic cancer is so challenging to treat

BY AMBER SMITH

The framework supporting the pancreas (or any internal organ) is called the stroma.

It’s comprised of connective tissue that helps to protect the organ and to hold it in place.

When cancer develops in the pancreas, that stroma is an obstruction. It shields the cancer from treatment attempts and allows it to spread through the body.

“A lot of work is being done to look at how we can break down that stroma,” says Thomas VanderMeer, MD, a pancreatic surgeon and interim director of the Upstate Cancer Center.

He explains that the stroma’s extracellular matrix (*) tends to be thick, generating lots of scar tissue. “Those thick scar lines prevent the infiltration of chemotherapy into the tumor,” he says.

At the same time, the cancer prompts extra blood vessels to develop. “That gives the cancer a route out of the primary site in the pancreas and into the bloodstream, to spread to other organs.”

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Among the cells that surround the tumor are cancer-associated fibroblasts, some of which encourage tumor growth, and some of which secrete a protein that essentially helps block the body’s immune system surveillance. Lymphocytes, which would otherwise fight off infections and eliminate diseased cells, cannot gain access to pancreatic cancer cells.

“This is really a big area of investigation and success in a lot of other cancers,” VanderMeer says of immunotherapeutic strategies. “It hasn’t been as effective in pancreatic cancer because there’s this barrier to the body’s own immune cells to get in and to attack the pancreatic cancer.’

He says researchers continue to look for ways around the stroma, to improve the treatment of patients with pancreatic cancer. “If we can, for example, get the protein around the tumor to allow the chemotherapy to enter, then chemotherapy can be much more effective.” CC

(*) The extracellular matrix is a large network of proteins and other molecules that surround, support, and give structure to cells and tissues in the body. It helps cells attach to, and communicate with, nearby cells, and plays an important role in cell growth, cell movement and other cell functions.

– National Cancer Institute

SHARING EXPERTISE

Advanced cancer that calls for aggressive treatment When bladder removal is recommended, patients have options

BY AMBER SMITH

Bladder cancer is considered advanced when the cancer invades the muscle.

In these cases, patients may face removal of the bladder in order to treat the cancer.

“If you don’t do something aggressive, such as remove the bladder, most of the time the cancer will spread,” explains urologic oncologist Joseph Jacob, MD. “Almost 100 percent of the time, the cancer will spread into the bloodstream and the lymph nodes.

And then at that point, there’s no cure for the patient.”

It may sound extreme, but removing the bladder can be lifesaving. The procedure is called a cystectomy.

The kidneys filter blood and create urine.

Tubes called ureters carry the urine to the bladder. If that organ is removed, Jacob says, most patients have three options:

– A urinary conduit, called a urostomy.

In this procedure, surgeons turn a small segment of the patient’s small bowel into a pipe that carries urine from the kidneys out through a new opening in the skin, into a bag. The patient would periodically empty the bag.

“This is the most common approach because it’s the most straightforward,” Jacob says. “But it may not be the most appealing to patients.”

– A neobladder, or bladder replacement.

This makes use of a slightly longer segment of small bowel.

“I tell patients we do some origami work.

Basically, we fold this into a sphere, and then you connect that bladder back to the urethra.

Then the patient would learn how to urinate like they’re used to urinating.”

– A continent urinary reservoir, known as an Indiana pouch. Surgeons form a pouch using part of the colon, with a natural valve. Urine collects in the pouch. To empty it, the patient uses a cathether, or tube, from a small opening in the side of the abdomen.

These are all major operations. Jacob says most patients remain hospitalized afterward for at least three days, and it takes a month or two to recover from surgery.

– Bladder preservation. Some patients who oppose bladder removal opt for treatment that includes a combination of radiation and chemotherapy, Jacob says.

He adds that studies of bladder preservation have shown about 70 percent of patients are able to keep their bladders, but about a third require bladder removal after radiation and chemotherapy.

Jacob helps patients decide which option is best for their situations. “I try to find out what their priorities are, what their goals are.”

If urinating normally is most important to a young man, for instance, the neobladder might work best. For a young woman who wants to avoid a bag, the Indiana pouch opening can be covered with a small bandage. Someone who is concerned about how well they will do in a lengthy operation may be more suited for bladder preservation.

A person who wants definitive treatment may choose the straightforward urostomy.

Joseph Jacob, MD

What’s the most common symptom of bladder cancer?

Blood in the urine.

Kidney stones, urinary tract infections and other conditions can cause blood in the urine, but so can bladder cancer. The blood may appear pink, red or cola-colored, and it usually is not painful. Some medications and foods, including beets and red berries, can discolor the urine.

Your primary care provider may be able to identify the cause of blood in your urine – or refer you to a urologist.

Regardless of which option a patient wants, Jacob says it’s important to select an experienced surgeon at a center of excellence where many patients with bladder cancer are cared for. “You need someone who understands all the nuances and the little setbacks that can come up and will be able to deal with them.” CC upstate.edu/cancer l spring 2022 l C A N C E R C A R E

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SHARING EXPERTISE

Pharmacist Timothy Chiang talks about

Chemotherapy

Timothy Chiang is a pharmacist in the Upstate Cancer Center.

PHOTO BY ROBERT MESCAVAGE

What is chemotherapy?

Any medications that are used to treat fast-growing cells in the body, and typically this is referring to cancer cells. The goal is either to kill the cancer cells or to slow their growth.

Now it's commonly known as a drug called mechlorethamine. They first used it to treat a lymphoma patient in the 1940s, and that patient had great results with it and ended up in remission.

When did chemotherapy begin?

The first chemotherapy drug was available back in the 1940s. It was derived from mustard gas, a chemical weapon that was used in World War I. A doctor was looking at some of the autopsy results for some of the soldiers from the First World War, and they noticed that the bone marrow in those patients was significantly altered by the mustard gas. They realized that they might be able to use this type of medication for cancer.

How has it evolved?

Scientists are now using more targeted approaches to try to minimize some of the toxicities to patients. A lot of the new oral medications stop cell signaling, and some of the newer intravenous medications are looking at the same thing: They're targeting a specific molecule on the outside of a tumor and trying to minimize toxicity to our patients.

Some modifications were made to the mustard gas, and then it was made into an injectible product. At that point, it was called nitrogen mustard.

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We hope the medications have become less toxic. Unfortunately, there are still a lot of side effects even with some of these newer medications. By inhibiting a specific

molecular target, sometimes those targets still affect some normal cell function as well. And that's what leads to some of these side effects.

Why are some chemotherapies in pill form and some intravenous, through a needle?

It depends on how the medication can be absorbed. Some medications can be absorbed orally, and when they go through the gut, they need to be converted by the liver. Some medications just aren't able to be absorbed that way. It also has to do with some of the toxicities of the medications, as well.

What determines if a patient has to be hospitalized overnight for an infusion?

Sometimes it has to do with certain risk factors for a particular patient. If they are at risk for having some type of reaction or have had a history of

SHARING EXPERTISE

reactions, it may be safer for the patient to receive the infusion in the hospital for closer observation. Some patients need something called a continuous infusion, where they need to be hooked up to a pump.

Some patients are newly diagnosed in the hospital, so they need to get treated right away.

Also, depending on the cancer type – certain acute leukemias, for instance – they may need to be treated in the hospital just because of the severity of the disease.

How should someone prepare for chemotherapy?

I tell patients to get plenty of rest and keep up their nutrition. That is really the key factor to preparing themselves for this. Hydration and nutrition are probably the best things

that they can do. And, make sure they have a good support system as well, to make sure they have people around them who are able to help them during this tough time.

What side effects are typical?

It's very individualized to the drug and to the patients, too. Some patients will not have any side effects from the medications, and others will have some reactions to the medication.

Chemotherapy works on the fastgrowing cells in the body, and some of the fastest-growing cells in the body are the cells that produce the hair. So the hair is one of the first things that can go, unfortunately.

How do you combat nausea?

Depending on the chemotherapy that's being given, there are a wide

range of anti-nausea medications we can give. It’s important for patients to remember that if they still have nausea and vomiting, they need to let the oncology team know. We can always find something a little bit stronger to provide relief for these patients.

How can loved ones help?

The best thing to do is be an advocate for the patient. Do your research on the chemotherapy medication that the patient is going to be getting. Be present for the education and just keep an eye out for the patient.

Sometimes patients are too weak to discuss or too scared to mention anything. If you can be an advocate for them, that really is the best thing.

CC

New location opens for cancer treatment A new center for cancer care and infusion services opened this spring at Upstate Community Hospital. Board-certified physicians, oncologycertified nurses and other caregivers will staff the space, which will be available to patients from 8 a.m. to 4:30 p.m. weekdays.

In addition to 11 infusion chairs and four exam rooms, patients will have access to emotional counseling, spiritual care, nutritional counseling and rehabilitation.

Parking is free, and valet parking is available.

upstate.edu/cancer l spring 2022 l C A N C E R C A R E

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CARING FOR PATIENTS

Upstate breast surgeons Ranjna Sharma, MD, (left) and Lisa Lai, MD.

The reflector is about the size of a grain of rice.

Breast surgeons deploy 'scouts' to locate tumors, lesions

BY EMILY KULKUS

Breast cancer surgeons at Upstate University Hospital use a new technology called Savi Scout that makes locating and removing tumors and lesions easier and more precise.

Savi Scout involves inserting a tiny sensor called a reflector into a tumor or abnormality in the breast that cannot be felt from the outside. The reflector is about the size of a grain of rice and uses safe, nonradioactive radar waves to signal where it is located. This offers surgeons and their patients two big advantages over existing wire localization technology: The reflector can be inserted many days prior to surgery, and it does not involve wires protruding from the body, which can be uncomfortable and are at risk of moving.

Patient comfort “For many patients, the reflector is more comfortable, less anxietyprovoking and also saves time on the day of surgery,” said Ranjna Sharma, MD. She is chief of breast surgery at Upstate. “We felt these were important benefits to offer to our patients.”

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The typical wire localizers need to be inserted just prior to surgery in the radiology department, which is separate from where the surgery occurs. That procedure adds additional time – usually about an hour for the procedure as well as travel time between departments – beforehand. Wire localization involves having several inches of wire protruding from the breast, which the surgeon follows to locate the tumor. The wires can be uncomfortable and can sometimes move, which can make finding the tumor in surgery more challenging, Sharma said.

Instead, the reflector is inserted using a long, thin, metal device similar to biopsy equipment, and it cannot be felt once inside the breast. It also should not move, Sharma said.

The breast surgeon uses a probe on the surface of the skin to detect where the reflector is and guide the incision.

This can also help the cosmetic success of the procedure, Sharma said.

The Savi Scout can be detected up to 6 centimeters deep, which means for some patients with deeper tissue or tumors, the wire localization technique will still be necessary. The goal is to

C A N C E R C A R E l spring 2022 l upstate.edu/cancer

remove the reflector with the tumor or lesion; it can be used with cancerous and noncancerous tumors and lesions as well as lymph nodes. Two reflectors may also be used on one large tumor if necessary, Sharma said.

More precision Upstate breast surgeon Lisa Lai, MD, said the precision of the new technology helps surgeons accurately remove cancerous tissue while also preserving healthy tissue. “The device increases the precision of a lumpectomy by guiding the surgeon to the exact tumor location and telling the surgeon the actual distance to the tumor,” Lai explained.

“The goal of a lumpectomy for breast cancer is to remove the tumor with a normal rim of breast tissue around it, so the edges of the tissue are free of cancer. Research shows that use of this device improves success of the operation by increasing the chance that the tumor will be fully removed and thus decreasing the chance of needing a second operation to remove more tissue,” Lai said. CC

RESEARCHING FOR ANSWERS

Will cancer spread?

Leszek Kotula, MD, PhD, discovered the ABI1 gene in 1998.

PHOTO WILLIAM MUELLER

Upstate researchers work on predicting whether breast cancer will metastasize

BY JEANNE ALBANESE

Metastatic breast cancer is often incurable.

Mammograms can detect tumors, but currently there is no way to precisely predict whether or where breast cancer will spread.

A team of researchers and physicians at Upstate Medical University, led by Leszek Kotula, MD, PhD, is working to change that.

“By analyzing the primary tumor gene expression, we can predict, with very high potential to be correct, whether a tumor metastasizes in the future, in 10 years or in 20 years, based on the collaboration of seven genes,” Kotula says. A gene called ABI1 is key. It’s one of the proteins of the WAVE complex, which is a multiprotein unit responsible for making cells invasive.

New way of thinking Kotula’s study, “ABI1 based expression signature predicts breast cancer metastasis and survival,” was published in the prestigious journal Molecular Oncology in December.

“The study carries significant potential to be utilized in clinical diagnosis in the future,” he says. “Our paper is producing a new kind of paradigm.”

Kotula, an associate professor of urology, biochemistry and molecular biology at Upstate, discovered the ABI1 gene in 1998. In 2001, he published the first study on the gene’s role in prostate cancer. Subsequent work from his lab delineated mechanisms of prostate tumor progression associated with ABI1. In prostate cancer, the presence of the gene inhibits cancer growth, while low levels or the absence of it leads to prostate cancer.

It’s the opposite in breast cancer.

High levels of ABI1, or an overexpression, corresponds with poor survival and shorter relapse time in patients with primary breast cancer tumors.

“I started breast cancer research because I was puzzled by the discordant function of the protein/gene in different types of cancer,” Kotula explains. “It’s very interesting. We are coming to an understanding about this gene’s role, and it all makes sense now. But we need to do a lot of research. It’s a homeostatic gene. Too much is bad.

Too little is bad. You need to have a certain level. The homeostatic genes like ABI1 often play a critical role in drug treatment sensitivities and resistance.”

continued on page 20

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RESEARCHING FOR ANSWERS

Will cancer spread? continued from page 19 In the breast cancer study, the team translated observations from a mouse model to genetic information of human breast cancer patients.

Kotula’s student Angelina Regua (who is now a postdoctoral fellow at the Wake Forest Cancer Center) disrupted, or knocked out, the ABI1 gene in laboratory mice with breast cancer. When both copies of the gene were knocked out, there was almost no metastasis. When one copy of the gene was knocked out, tumor progression slowed. The mouse model established that ABI1 is the critical gene responsible for metastasis to the lungs.

Then the team analyzed human gene information using data provided by The Cancer Genome Atlas and concluded that seven genes predict metastatic potential.

Collaborative work Upstate’s Vladimir Kuznetsov, PhD, a professor of urology, biochemistry and

molecular biology, and his group of students, in collaboration with Kotula’s lab, developed a seven-gene prognostic ABI1-based gene signature for breast cancer metastasis.

The work was a collaborative effort between the Kotula and Kuznetsov laboratories, Upstate oncologist Abirami Sivapiragasam, MD, and Isabelle Bichindaritz, PhD, from SUNY Oswego.

The study began in 2015. CC

The Informed Patient

A podcast connecting you with health, science and medicine

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Breast cancer that has spread to the lungs of laboratory mice with the ABI1 gene (left) and without the gene (right).

Note that the size and number of metastatic foci are significantly bigger in the sample with the ABI1 gene. Disruption of the gene significantly decreases the number of metastatic foci.

Upstate Medical University’s podcast features experts from Central New York’s only academic medical center.

Listen on your favorite podcast platform.

Find our episode collection at TheInformedPatientPodcast.org

LIVING WITH CANCER

DON’T PANIC

A financial counselor can help reduce the stress of paying for treatment

BY AMBER SMITH

“I don't think people really realize the financial impact that cancer can have on them,” says Linda Naples, a financial counselor at the Upstate Cancer Center.

Say you're 65, living on Social Security. Medicare is your health insurance, and your premium costs about $150 a month. You don't think about buying a supplemental policy because that can be an extra $200 a month.

Then you get diagnosed with cancer. Depending on what type of treatment you need, you may owe about $1,500 a month after Medicare pays its portion. Your treatment may go on for six or eight months. You could easily face an $8,000 bill.

Don’t panic.

“The financial aspect of dealing with a cancer diagnosis can be very complex and overwhelming, especially if you do not have insurance,” Naples says. “It’s my job to help minimize the confusion and the stress.”

• First, make sure you have adequate health insurance. Your age, employment status, veteran status and income level will help determine options. If you have no insurance when you are diagnosed, Naples can help find coverage.

• Familiarize yourself with how your prescription plan works and what your insurance plan covers

– and for how long. Some insurance plans include an “out-of-pocket maximum,” and once you meet it, the insurer pays the rest of your medical bills.

• Ask whether your doctors and the hospital where you get care “participate,” or accept payment from your insurance plan. If they do not, you likely will be responsible for the full cost of care.

• When treatment or medication is recommended, find out if you need authorization from your insurer before beginning.

• Stay on top of your medical bills. Organize them in a folder as they arrive. Ask, if you need help understanding the charges.

• Know that a variety of patient assistance programs exist. Pharmaceutical companies sometimes will help pay for coinsurance. Onetime grants can sometimes help with groceries, or a gas card for transportation.

The Upstate Outpatient Pharmacy offers financial assistance and helps find ways to offset the cost of medications. Various foundations or cancer groups may assist with insurance premiums. But none of these groups will know you need financial help unless you speak up.

Naples suggests talking to your doctor or nurse – or to her. CC

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LIVING WITH CANCER

Get inspired!

Katie Krawczyk, a registered dietitian at Upstate, recommends that people with cancer can improve their nutrition – perhaps through cooking – to help ease their cancer journey and improve their overall quality of life. These books are four of her favorites:

4 recommended cookbooks

“The Cancer-Fighting Kitchen,” Second Edition, by Rebecca Katz with Mat Edelson (2010) Potter/Ten Speed/Harmony "One Bite at a Time: Nourishing Recipes for People With Cancer, Survivors, and Their Caregivers" by Rebecca Katz with Mat Edelson, Celestial Arts (2008) “American Cancer Society’s What to Eat During Cancer Treatment” by registered dietitians Jeanne Besser, Kristina Ratley, Sheri Knecht and Michele Szafranski (2009) “The Cancer Lifeline Cookbook: Good Nutrition, Recipes and Resources to Optimize the Lives of People Living With Cancer” by registered dietitian Kimberly Mathai with Ginny Smith, Sasquatch Books (2004) CC

Together we can make a difference Honor and remember the special people in your life with a tribute or memorial donation. You can make your gift to any of the Upstate Foundation’s funds, which are designated for a variety of causes including patient care, education, research, community health and well-being, and others. Call 315-464-4416 for details.

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LIVING WITH CANCER

Jill Majeski, PsyD, (left) and Dorianne Eaves, PsyD, are psychologists at the Upstate Cancer Center.

PHOTO BY SUSAN KAHN

Psychologists

offer guidance to patients of any age

Poor body image. Changes in sexual functioning. End-of-life concerns.

People with cancer may struggle with these and other physical changes and existential concerns.

thinks therapy is ‘just talking,’ but we can work together on issues like challenging treatment decisions, disruptions in sleep and strains on interpersonal relationships.

so that patients and families with similar medical conditions and shared experiences can get to know each other and learn more about living with and managing their health conditions.

“A cancer diagnosis is disruptive,” explains Dorianne Eaves, PsyD, of the psychosocial oncology program at Upstate. “I tell patients, ‘You have valid reasons for the emotions you are feeling.’”

“We focus on the individual’s wellbeing in relation to cancer,” she continues. “We can all benefit from support. Participating in therapy doesn’t mean you are not handling your situation well.”

“I work with families to identify their worries, challenges and hopes and to do our best to meet those hopes, big or small,” she says.

Therapy for adults Eaves works with adult patients, spouses and families from cancer diagnosis through treatment and survivorship. At the first appointment, she interviews them to learn what is going on in their lives. How is their quality of life? What are their treatment goals?

Therapy for children and families Jill Majeski, PsyD, works with the Waters Center for Children’s Cancer and Blood Disorders at Upstate. She offers psychological assessments and therapy, including behavioral treatments to manage pain and symptoms, and other supports to help sick children and their families lead the best lives possible.

“Cancer patients are often surprised at how much can be accomplished in therapy,” Eaves continues. “Society

As part of that support, Majeski offers educational and social programs

Majeski also provides psychological services at clinics throughout the Upstate Golisano Children’s Hospital, with the CHOICES Pediatric Palliative Care Program, and at the Perinatal Center, where she works with families whose babies are expected to be born with serious medical conditions.

Majeski also offers individual and group grief and bereavement services.

Appointments with the psychosocial oncology program are available to Upstate patients. Call 315-464-HOPE (4673). CC

upstate.edu/cancer l spring 2022 l C A N C E R C A R E

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750 East Adams Street l Syracuse, NY 13210

The Upstate Cancer Center's 25th annual National Cancer Survivor's Day takes place June 5 at the Rosamond Gifford Zoo at Burnet Park in Syracuse. We hope you can join us: upstate.edu/ncsd

UPClose

IV hoodie Upstate nurse Kathleen Root for many years has been part of Improve Care Now, a national organization dedicated to improving care for kids with Crohn’s disease and ulcerative colitis. On the group’s website last year, she spotted an intriguing new product.

keeps pediatric infusion patients cozy during treatments A girl in Connecticut named Ella who needed infusions envisioned a sweatshirt with zippers in the arms so that kids could stay comfortable and warm during treatment. With her mother’s help, Ella developed IV hoodies — long-sleeved, hooded sweatshirts with a zipper up the front and zippers stretching the length of each arm. The arm zippers have two pulls, allowing medical providers to access the patient’s arms to check blood pressure and to insert an IV and then zip it closed around the line.

“I wanted to make a sweatshirt for kids getting IV infusions that is comfortable, motivational and most of all does not look like a hospital gown or medical wear,” Ella says on the website, ivhoodies.com Root knew the hoodies would be a hit with her patients. She works in the Karjoo Family Center for Pediatric Gastroenterology at Upstate, which treats about 200 inflammatory bowel disease

patients, with 100 receiving regular infusions at the Upstate Cancer Center.

Those infusions can last one to five hours, depending on the treatment, Root says.

She and nurse Lisa Susko obtained a $6,000 grant from the Upstate Foundation to purchase IV hoodies in a variety of sizes, so they can give them to patients as they come for infusions. The hoodies are gray, with an Upstate Golisano Children’s Hospital logo.

“I’m passionate about these kids, many of whom are diagnosed at a young age,” Root says. “Some of them have to spend a full day at the infusion center once a month. I want our patients to know that people care about what they are going through, and this is a small token of our acknowledgment.

“I have a soft spot for these kids. Crohn’s is a big disease that they’re going to have for the rest of their life.” CC