After Pancreatic Cancer Diagnosis, ‘How Long Do I Have?’

By Mary Frances Emmons, Editorial Contributor

Soon after receiving a clean bill of health at his annual physical, Jon White started having digestive issues and losing weight.

“I thought I had a bug,” he says.

Jon White before Chemo

His wife, Christine, noticed his color was off. Then a friend who is a retired nurse saw that White was jaundiced and told him to get to a doctor right away.

The diagnosis: Pancreatic cancer.

“The first words out of my mouth were, ‘How long do I have?’” says White, 61, an Orlando wine-market manager diagnosed in late 2020. He knew nothing about pancreatic cancer except that “anybody who has it dies.”

White’s assumption was a common one.

Although pancreatic cancer is rare, accounting for only about 3 percent of all cancers, such a diagnosis used to be tantamount to a death sentence.

But thanks in part to a new, next-level technology that allows doctors to target radiation treatments more precisely than ever before, there was reason for White to hope.

Hide and Seek

Doctors have long sought to treat pancreatic cancer with radiation and chemo as a prelude to surgery, working to shrink the tumor enough for safe and complete removal.

Their often-insurmountable challenge: The pancreas is about as hard to access as any organ can be. Tucked behind the stomach and nestled between the gallbladder, liver and spleen, it’s difficult to catch such tumors early. Very often, by the time pancreatic cancer is diagnosed, the tumor has spread.

When White returned to his doctor, she was bewildered, having seen him just weeks earlier. She immediately ordered a scan that showed a tumor on the pancreas.

In part because of the jaundice — a visible clue — White’s cancer had been caught unusually early.

White’s tumor was partially encircling his superior mesenteric artery — which provides oxygen and nutrients to the digestive system – but doctors could not say how closely. “If the tumor had totally encircled the artery, it would have been inoperable,” White says doctors told him.

He spent six months in 2021 undergoing 10 rounds of chemo. Multiple scans in those months showed the tumor had stopped growing — but it was still there.

Game Changer

In order to rid White of the tumor, his care team at Orlando Health Cancer Institute believed they would need to do surgery. But first they needed to shrink the tumor. Radiation is the traditional approach, but White was about to experience it in a whole new way.

Radiation treatments are generally delivered as high-energy, high-intensity X-rays that are focused on the tumor, killing the cancer cells. The difficulty is knowing exactly where to focus those rays. Diagnostic tools like an MRI can give doctors a general road map, but one that lacks precision.

Historically, radiation treatment machines have “essentially treated patients based on general anatomy, where we kind of guess where the tumor is at any given time,” says Dr. Patrick Kelly, director of radiation oncology research at Orlando Health Cancer Institute, who was the radiation oncologist on White’s team.

The ViewRay MRIdian SMART — for “MR-guided stereotactic adaptive radiation therapy” — is a new kind of MRI machine that combines diagnostics with treatment, giving doctors a real-time view of what’s going inside the patient’s body during treatment.

While most of us think of our organs as more or less fixed, “it would be more accurate to describe the goings on of our insides as in constant motion,” Dr. Kelly says. Simply breathing moves the diaphragm as much as an inch or two, pushing the stomach, pancreas and kidneys up and down. Digesting a big meal can push other organs aside. And our bowels function essentially through continuous movement.

“Watching the internal organs during treatment allows us to treat a tumor only when it is in the right place,” Dr. Kelly says. That precision protects surrounding healthy tissue and allows for a stronger radiation dose that is also more effective, cutting the typical number of treatments from about 25 or 30 to just five in White’s case.

“It’s pretty amazing, even as someone who’s done this for a while,” Dr. Kelly says of the view afforded by the MRIdian machine, which is available at only about 20 hospitals in the United States. “In medical school you learn the ways things move, but it’s another thing to see it live while you are treating a patient. This is the way radiation will be delivered in the future.”

“Truly, it was a game changer,” White says.

Thanks in part to White’s MRIdian treatments, the oncology surgeon on his Orlando Health team, Dr. Rajesh Nair, was able to extract all the cancerous tissue in a 13-hour surgery in August 2021. Recent scans showed White was “completely cancer free,” says his wife, Christine. “There is no cancer in his body at this time.”

Name It and Shame It

There’s more to Jon White’s incredible outcome than new technology and a crackerjack medical team. Attitude counts, he says.

I was determined this was not something that would define me. This would be an obstacle I worked through. – Jon White

“I was determined this was not something that would define me. This would be an obstacle I worked through,” White says. “People would come into the store and whisper, and I would say let’s talk about it.”

Humor — and faith — became his sword and shield.

For the port implanted to enable chemo treatments, there was only one choice for a guy in the wine business: Tawny. When Jon had to wear a chemo infusion bag for 46 hours — “like an oversized black fanny pack,” Christine says — he named that too: Chemo Noir.

“We decided early on that, where we could, we would embrace the challenges and kind of make fun of the cancer, name it and shame it,” Christine says. “It helped to try to keep things in perspective.”

Today, Jon White’s doctors have given him a better than 50 percent chance of long-term survival — unheard of for most pancreatic cancer patients. White’s mission now is to share his experience and to give hope to others.

“I’m the example that with faith, with determination and with great care, you can get through these things and still live a life as full as you want to live,” White says.

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