Pancreatic neuroendocrine tumor survivor enjoys dinner at a restaurant with a friend

Gail, right, finds comfort in socializing, like dinner out with a friend, after her pancreatic neuroendocrine tumor diagnosis.

The morning of Feb. 5, 2016, started like many for Gail. She got up early and headed to the gym for a workout with her trainer. She was feeling strong and healthy. 

Later that day, however, she noticed something unusual: her urine was a strange dark color, which she assumed was caused by blood.

A visit to urgent care revealed her dark-colored urine was instead due to excess bile, and an endoscopy provided an unexpected diagnosis – a pancreatic neuroendocrine tumor (PNET).

PNETs are a rare type of pancreatic cancer, comprising about 7 percent of pancreatic cancer diagnoses. PNETs involve the endocrine cells of the pancreas, which function to regulate blood sugar. The more common type of pancreatic cancer, pancreatic adenocarcinoma, involves the exocrine cells of the pancreas, which secrete enzymes to break down nutrients.

Pancreatic neuroendocrine tumor survivor receives help and advice from elderly neighbor

“You never know who might be a resource for help and advice,” Gail said, referring to her 93-year-old neighbor who’s reached out to her many times.

“On St. Patrick’s Day 2016, I underwent a 14-hour Whipple procedure to remove my tumor,” Gail said. “I turned 70 one week later.”

Gail then began a chemotherapy regimen to ensure all cancer growth was stopped.

But one year later, she learned her tumor had spread to her liver.

“I started a new chemotherapy regimen, and my oncologist recommended sending my tumor tissue for molecular profiling,” Gail said. “He enrolled me in PanCAN’s [the Pancreatic Cancer Action Network] Know Your Tumor® precision medicine service.”

Every pancreatic tumor is different. PanCAN strongly recommends molecular profiling of your tumor to help determine the best treatment options.

Through molecular profiling, Gail and her healthcare team learned her tumor had a rare, highly actionable alteration.

Highly actionable alterations are molecular changes in a tumor with strong scientific or clinical evidence in at least one cancer type that a certain treatment strategy may be especially effective. Through the first 640 Know Your Tumor reports delivered, PanCAN and partners learned that approximately 27 percent of pancreatic tumors (including both adenocarcinoma and PNETs) have at least one highly actionable alteration.

“I received a phone call from the precision medicine company, Perthera, and then another call from Emily Lyons, PanCAN’s Clinical Initiatives operations manager, emphasizing the significance of the rare alteration found in my tumor,” Gail said.

“I didn’t realize what a gift was being offered to me through this molecular profiling information.”

Gail quickly learned that a targeted therapy was available through a clinical trial for patients with various types of cancer that express the same molecular alteration as her tumor – and there was a site open near her hometown.

“The results have been remarkable – I’ve had a 72 percent decrease in tumor volume, and one tumor is no longer visible at all,” Gail said.

Pancreatic neuroendocrine tumor survivor takes medication and follows doctors’ orders

Taking her pills and following the plan of care – Gail is grateful for her medical team.

Gail went on to describe the excellent care she’s received through the trial, including regular blood tests and scans. “Everything is stable,” she said.

Gail is also grateful for the continued check-ins from Lyons, whom she considers a part of her team. Gail said, “Our conversations make me feel like maybe what is happening to me may help others in the future.”

Despite the positive response to the targeted therapy, Gail has experienced some challenging treatment side effects. She described partial bladder and bowel incontinence, as well as balance issues and mild gait ataxia, which is a lack of muscle control or coordination when walking. All these have prevented her from continuing her work as a physical therapist.

Still, Gail remains optimistic and grateful. “This experience has been emotional, spiritual and physical,” she said.

Gail has found that yoga and meditation help provide strength, concentration and a way to manage negative thoughts.

“I’m always so touched by the closing of my chair and restorative yoga class: ‘May you be happy, may you be healthy, may you be safe, may you live a life of ease.

“’Namaste!’”

Contact a Patient Central Associate
If you have questions about the diagnosis and treatment of pancreatic cancer, including information about molecular profiling and clinical trials, contact Patient Central.

Any treatments, including clinical trials, mentioned in this story may not be appropriate or available for all patients. Doctors take many things into account when prescribing treatments including the stage and type of cancer and the overall health of the patient. Contact Patient Central for personalized treatment options.