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Photo of Tom Shaw pancreatic cancer survivor

EDITOR’S NOTE
We regretfully announce that Tom Shaw recently lost his
battle to pancreatic cancer. He fought a courageous and
valiant battle. Tom will be forever missed.

BELOW WAS HIS STORY

The Role a Support System Plays for a Pancreatic Cancer Patient: Tom Shaw Shares His Story

Written By: Julia Brabant
March 2023

Date of Diagnosis: Aug. 5, 2022
Current Status: In treatment (chemotherapy)

Many cancer patients face similar adversities following a diagnosis. Some encounter frustrating delays when trying to meet with the right medical professionals. Others stress over the financial, emotional and professional repercussions that inevitably come with having cancer. In Tom Shaw’s case, having a strong support system proved invaluable in helping him overcome these and other challenges. So, too, did having an advocate to help him navigate diagnosis, treatment and beyond.

A high school teacher, Tom was living and working in Louisville, Kentucky, when he began experiencing intense lower back pain and ongoing digestive issues in April 2022. Recognizing that what he had went beyond regular indigestion, he met with his doctor, who performed an X-ray, suspecting constipation.

The X-ray revealed an anomaly in Tom’s digestive tract, prompting a CT scan. The CT scan showed inflammation in Tom’s pancreas, leading doctors to ask him if he was a big drinker. Tom expressed that he liked craft beer and sometimes had a couple a day. His doctors thought that might be the root of the problem and figured he was likely dealing with pancreatitis.

When Tom’s stomach pain worsened and the dietary changes he made had little effect, he visited his general practitioner with the hope that she’d help him get a meeting with a gastroenterologist. She did help him get an appointment – albeit nine weeks later. The gastroenterologist performed a thorough scan of Tom’s pancreas.

Sometime later, while Tom was sitting in his home office, a phone alert notified him that his test results were available. It was then that he learned he had cancer. He recalls looking around the room at the pictures of his loved ones hanging on the walls in the moments after and questioning whether his time with them was coming to an end.

“It can all seem very helpless and hopeless at first,” he said. “There’s also an immediate stigma with this type of diagnosis, and some doctors make you feel like there’s nothing they can do.”

Tom’s stepmother had a friend, Mindy Bloom, who told her about the Seena Magowitz Foundation and its efforts to fund pancreatic cancer research and educate and unite patients with the disease. Mindy had learned of the foundation through her cousin, Lynn Eisenberg.

The foundation then had Sue Chase, an advanced gallbladder cancer survivor, reach out to Tom and take on something of a “navigator” role on his behalf. Sue’s own daughter had been a longtime volunteer for the foundation, and when Sue received her own cancer diagnosis several years later, the foundation stepped in, putting her in touch with the care team that turned her situation around.

“Sue was so uplifting,” Tom said. “She helped me get my head and attitude straight.”

Seena Magowitz Foundation Founder Roger Magowitz also contacted Tom so that the two could discuss his case.

“We’re going to find you a place to stay and put you in touch with Dr. Douglas B. Evans,” Roger had told Tom, naming one of the nation’s preeminent pancreatic cancer specialists. “But here’s the issue: It’s in Milwaukee.”

Roger thought that might create logistical challenges, but for the first time in a while, Tom had luck in his favor.

His wife’s family already lived in Milwaukee, and Tom had spent quite a bit of time in the city when his own grandparents lived there during his childhood. Tom’s connection to the city ran so deep, in fact, that he and his wife had been planning a move there, anyway, to be closer to the people and places they loved.

With the Milwaukee move taking place sooner than planned, Tom got in to see Dr. Evans, an oncologist and surgical chair at Froedtert & the Medical College of Wisconsin. Dr. Evans and his team determined that Tom’s cancer had metastasized to his liver and that he wasn’t currently a candidate for a Whipple procedure, a surgery sometimes used to treat pancreatic cancer.

They began an aggressive chemo regimen, starting Tom on FOLFIRINOX before switching to a combination of gemcitabine, cisplatin and abraxane. The tumor on his pancreas has not grown since starting chemotherapy, nor has the one on his liver.

“For Dr. Evans, though, stopping cancer in its tracks isn’t good enough,” Tom said. “He wants it gone.”

What, exactly, caused Tom’s cancer is unclear – but he wonders if it might have environmental origins. He knows of 10 former colleagues who taught alongside him at school who also received cancer diagnoses, raising questions about whether lead in the water might have contributed to the high incidence. What Tom’s future holds in terms of treatment after chemo is also unknown – but he’s happy to now have the utmost confidence in his care team, especially because he didn’t always feel that way.

“With such a low occurrence of this disease, a lot of doctors don’t always jump to pancreatic cancer,” Tom said. That said, he can’t help but wonder if he could have begun treating his cancer earlier, had his initial doctors sought the opinion of a gastroenterologist, or had it not taken nine weeks for him to see one at his own urging.

For now, Tom is continuing chemotherapy, and he feels lucky to be able to do so in a city that has always felt like home. He also feels lucky to receive treatment at Froedtert, where Dr. Evans and his team plan to use his case to help pinpoint genetic vulnerabilities that may show a predisposition to pancreatic cancer.

Tom has also gotten to know other pancreatic cancer patients since his diagnosis, some of whom he met through the Seena Magowitz Foundation.

“Joining support groups and meeting other patients really helped me,” Tom said. “It helped having patients who’d been through it telling me what to expect; what to do.”

He’s also grateful to Sue Chase and the Seena Magowitz Foundation for the roles they played in developing Tom’s treatment plan.

“You need an advocate when you go through something like this, and the Seena Magowitz Foundation wasn’t just an advocate – they provided a comfort zone,” he said. “Meeting Sue and Roger and getting to know other patients who’ve been there gave me hope that this was not a death sentence. When I had no hope and no help, they gave it to me.”

While Tom encourages other cancer patients to work with navigators and cancer advocates, he also cautions them against putting too much stock in a doctor’s prognosis.

“I don’t believe in prognoses,” he said. “I believe in how I feel now, and right now, I feel great.”

Tom continues to undergo chemotherapy to treat his pancreatic cancer as of March 2023.

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4 thoughts on “He Lost A Courageous Battle Against Pancreatic Cancer”

  1. francine luria says:

    my friend Sue Chase is the best so lucky to call her my friend and she is your ace in the hole when u need her

  2. jill Permutt says:

    Sue chase is a fighter and if she fights for you, Lucky you!

  3. Bonnie Weiner says:

    I will be forever grateful that my husband is a childhood friend of an incredible woman named Sue Chase. When we learned that our 31 year old son has bile duct cancer, she was exactly the person I needed to speak with! Sue reached out to me on her own and lifted me from my place of fear and despair. With her great energy and extensive knowledge, Sue set us on the path to treatment with superb advice. We are far from finished, but I feel hopeful and at least partially in control of our lives again! Thank you, Sue! You really are my angel!

  4. Konrad Gannon says:

    Just heard of Tom’s passing. Good friend from many years ago. Very sad but after reading this good to hear he had strong support and help.

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