Survivors, caregivers working to raise awareness of pancreatic cancer

The disease was ugly and unyielding, killing with a cruel swiftness.

When Thomas Milton was diagnosed with pancreatic cancer in 2021, it shook his family to its core. Linda Milton, his wife and caregiver, knew next to nothing about it. But suddenly she and the rest of their family were drowning in doctor’s visits, surgeries, chemotherapy sessions, radiation treatment and more.

In less than a year and a half, Thomas Milton had died from the disease.

Linda Milton wants to help prevent more people from experiencing what her husband suffered through.

“I want to make sure he’s never forgotten. I know that he’d want to help,” said Linda Milton, who lives in Franklin.

Pancreatic cancer is now the third deadliest cancer in the United States, estimated to kill more than 50,000 people in 2023. But for all of the attention cancer as a whole receives, pancreatic is still relatively unknown. Money for research into the disease lags behind other cancers, and few people know the signs in order to catch it early enough for effective treatment.

November is Pancreatic Cancer Awareness Month, and those whose lives have been impacted by it want to shine a spotlight on the disease. The more people understand how deadly it is, the closer we can move toward a cure.

“All of us have either lost someone, or we’re survivors. We all know what a terrible diagnosis this is. We’re working so that other people don’t have to face it,” said Jenny Bivans, chair of the Indianapolis chapter of the Pancreatic Cancer Action Network. “There’s no cure, there’s no easy way to detect it. We just need someone to put all of the pieces together and be able to detect it early and treat it.”

The statistics on pancreatic cancer are sobering. The American Cancer Society estimates 64,500 people will be diagnosed with the disease this year, while 50,550 will die from it.

By 2030, it is expected to be the second-deadliest form of cancer.

Of all cancers, pancreatic cancer has the lowest five-year survival rate — 12%. When the disease is detected in its earliest stages, before it spreads, that number jumps up to 44%, though.

“The big thing with this particular cancer, with it being one of the most aggressive cancers, people’s odds are much, much better if they get diagnosed early,” said Marty Hynes, a pancreatic cancer survivor and chair of outreach for PanCAN in Indianapolis. “But not many people know about this particular cancer.”

Hynes was diagnosed with the disease in January 2021, which came as a massive surprise to him. While working at home during the COVID-19 pandemic, he was eating lunch when his wife when she exclaimed that his skin was a shocking shade of yellow.

Running into the bathroom, he confirmed it.

“Sure enough, my eyes were yellow. I thought, I am jaundiced, and this is not good,” he said.

Hynes called his physician, who had him in for an examination immediately. Bloodwork and scans found that he did have a tumor on his pancreas.

After he was diagnosed, Hynes found the Pancreatic Cancer Action Network. Also known as PanCAN, the organization was the first in the United States dedicated to fighting pancreatic cancer in a comprehensive way, and for more than two decades has been providing services across the country.

The group helps raise money and funds vital research, as well as advocating the federal government for increased funding for pancreatic cancer. Most importantly, the group provides information about treatment options, diet and nutrition, support resources and more to patients and their caregivers.

“They’re incredibly helpful to the community of patients suffering from pancreatic cancer,” Hynes said. “When you get such a horrible diagnosis, with such a poor survival, you don’t really know where to turn for help. PanCAN is a great organization for helping people, and helping them in a variety of ways.”

Hynes has been involved in advocacy at the federal level, speaking with politicians about pancreatic cancer and why more funding is needed for it.

“The only way we’re going to improve those statistics is better research — better research into early diagnosis, better research into newer and more effective treatments that we currently have available,” he said.

Bivans found PanCAN after her sister, Vicki Winkler, was diagnosed with advanced pancreatic cancer in 2016. Winkler received her treatment in Indianapolis, at IU Simon Cancer Center, and because Bivans lived in Zionsville, they would stay in her home.

The severity of the disease was devastating.

“When you get a diagnosis of pancreatic cancer, it just kind of takes your breath away because, if it’s advanced, you may only have weeks to live, or maybe months. Most people with Stage 4 pancreatic cancer died within a year,” she said. “You have this feeling of hopelessness when someone you love is diagnosed, so someone at IU Simon Cancer Center gave me information on PanCAN.”

Bivans checked the organization out, and saw there was a fundraising event called PurpleStride approaching. To help raise awareness of pancreatic cancer, as well as fundraise for research, PanCAN organizes the annual PurpleStride each April. In Indianapolis earlier this year, participants raised more than $220,000.

It was an opportunity to act, she said. Her team, Victory for Victoria, is still active and has raised $89,000 since 2016.

“It gave Vicki hope that there was a team surrounding her. She was able to attend three of the events herself, and just the opportunity to network with other survivors was important,” she said.

Though Winkler died in 2020 from the disease, Bivans has remained active in PanCAN. Leaders approached her about being the affiliate chair.

“I did it to honor my sister,” she said. “It keeps me close to my sister’s memory.”

Linda Milton has also become involved in raising awareness in honor of Thomas’ memory.

He was diagnosed in August 2021, after suffering from an extended period of pain in his back and stomach. Initially, doctors took CT scans but could not find any cause for the discomfort; he was told it was all in his head, Linda Milton said.

Finally, he woke up and had turned a sickening shade of yellow. Another trip to the doctor resulted in a biopsy, which showed he had pancreatic cancer.

“(Pancreatic cancer) is not talked about enough. It needs to be researched more. There needs to be more doctor training, so that if a patients comes in with these symptoms, they know what it is,” she said.

To treat the disease, Thomas had an operation called the Whipple procedure. Surgeons removed the head of his pancreas, his small intestine, part of his stomach and bile duct. Subsequent treatment required chemotherapy and radiation over the course of six months.

All indications was that the cancer had been eliminated. But shortly after his final treatment, a PT scan showed otherwise.

“He was all excited about going back to work as a Marion County special deputy. We walked in the doctor’s office and asked, ‘When do I get to go back?’” Linda Milton said. “The doctor just looked at us and told us the PT scan showed it was back.”

Though Thomas Milton returned to the hospital to try different forms of chemotherapy, the cancer remained. As a last resort, the Miltons flew to Texas to investigate clinical trials at MD Anderson Cancer Center.

But his tumor wasn’t eligible for any of the trials.

“I knew it was starting to get bad when he’d have to hold onto my shirt to walk into the hospital, or I’d offer to get a wheelchair and he wouldn’t fight me,” Linda Milton said. “Those three months, he went quickly.”

On Feb. 2, 2023, he died. He was 55 years old.

“He fought more than I ever would,” Linda Milton said.

In the depths of grief following his death, she looked for some form of support. She found it in PanCAN, coming across their Facebook page before finally engaging and signing up for PurpleStride.

The more she learned, the more she wanted to be involved.

“I wanted to do something. I was angry, angry that in the United States we’re not doing more,” she said.

Leaders asked if Linda Milton wanted to be chair of the caregiver and survivor committee for Indiana. Though she’s just now getting into the role, she hopes that her efforts can make a difference for both patients and their families.

In recognition of Pancreatic Cancer Awareness Month, PanCAN has planned an event called PurpleLight.

The gathering was created for survivors, family and friends who have felt the impact of pancreatic cancer. Organizers have put together a ceremony that includes a reading of names, honoring survivors and remembering those who have been lost to pancreatic cancer.

Linda Milton also hopes to start individual caregiver and survivor chats to provide more real-time help for people affected by it.

“I just don’t anybody else to go through what I’ve gone through,” she said.

AT A GLANCE

Pancreatic Cancer Action Network

What: An organization, also known as PanCAN, dedicated to improving the lives of everyone impacted by pancreatic cancer by advancing scientific research, building community, sharing knowledge and advocating for patients.

Mission: Funding research aimed at all aspects of pancreatic cancer, from early detection to new treatments; providing information about treatment options, diet and nutrition, support resources and more; advocating at the federal level to increase funding for research, and forming communities of support locally.

Upcoming event: PanCAN’s Indianapolis affiliate presents PurpleLight from 4-5 p.m. Nov. 12 at 5150 71st St., Indianapolis. The event is a gathering of survivors, family and friends who have felt the impact of pancreatic cancer. During the PurpleLight event, there will be a ceremony that includes a reading of names, honoring survivors and remembering those we’ve lost to pancreatic cancer. PurpleLight is a free event and open to the public, though RSVPs are required. Reserve a spot by going to pancan.org/get-involved/volunteer/local/events-and-activities and searching for the Indianapolis affiliate.

Information: Facebook.com/groups/PanCAN.Indianapolis or pancan.org.