Fighting pancreatic cancer in Duluth, part 2

Part 1 of this article appeared in the Nov. 20 issue.

November is Pancreatic Cancer Awareness Month. According to the American Cancer Society, pancreatic cancer has the lowest five-year survival rate of any major cancer, at only 8 percent. This disease is the third leading cause of cancer-related death in the United States.

When people refer to pancreatic cancer, they are most commonly referring to exocrine tumors, or tumors that form in exocrine cells of the pancreas. Yet there is a rare form of pancreatic neuroendocrine tumors which form in islets, or cell clusters of the pancreas, which account for 2-4 percent of pancreatic cancer diagnoses.

"It's a totally different form of cancer, even though both originate in the pancreas," said St. Scholastica music instructor LeAnn House. "It's a little bit slower moving. There is no cure, though I have heard of some people getting all of the cancer cells removed surgically. But mine has spread to more areas."

LeAnn House has taught music at the College of St. Scholastica for 38 years. She's very involved in community and church events, such as making pies for the CHUM Rhubarb Festival.

House was diagnosed with pancreatic neuroendocrine, or PNET, cancer in June of 2012, though she had symptoms as early as 2010. She remembers waking up one morning with intense pain in her lower chest.

"It was like extreme heartburn, which was very unusual. I'm not someone who gets heartburn, let alone this severe. I knew something was wrong," House said.

House's form of tumor grows slower than exocrine pancreatic cancer. The typical form of pancreatic cancer spreads quickly, reaching out and invading other tissue. PNET tends to grow within the pancreas at first, not spreading immediately. However, House said the tumor is also very resistant to treatment.

"It's tough too because, as my oncologist at the Mayo Clinic said, it's so rare that there really isn't much research on it. Because you could never find a large enough body of people to conduct general research," House said.

When she was first diagnosed, House said she went through the seven stages of grief.

"I remember denying it at first. I thought, 'This can't be. I can't have cancer.' But eventually you have to accept the facts and you have great motivation to do everything you can to take care of yourself," House said. "At some point, you hit a new normal. I mean, you can't live in crisis mode all the time for four years."

House has received chemotherapy treatments for the past four years. She also had a complex eight-hour pancreaticoduodenectomy, best known as the Whipple procedure, to remove a portion of her pancreas, bile duct and gallbladder.

"Surgery is no big deal while you're under. I can't imagine what it must have been like for my family to wait for eight hours in the waiting room while I was in surgery," House said. "Coming back from that was rough."

House recalls having having to have help repositioning in bed after the surgery.

"That was one of the weirdest things. Because you have this long cut in your abdomen, you have no control over your abdominal muscles because they've all been severed. So to roll yourself over in bed is impossible. It's a weird thing to have to ask for help," House said.

It took a long time for House's digestive tract to begin to work again after the surgery. There are some side effects to the treatments. She must remain well hydrated to avoid abdominal pains. The chemotherapy causes illness and fatigue.

"Cancer treatments zap the energy and stamina right out of you. I have to be more intentional with what I do in the day, because I don't have the energy to do everything anymore," House said.

Nonetheless, House is aware of the areas in her life where she is fortunate.

"That said, I've been very fortunate to have a fully functioning pancreas. And even though I only have half a pancreas, I'm not diabetic. And my digestive system is still working. So again, there's much to be grateful for," House said. "You can sit and feel bad about all your problems, but I certainly have much to be grateful for in terms of how my body has recovered and the support I've received from family and the medical community."

To learn more about pancreatic cancer or pancreatic neuroendocrine tumors, visit pancan.org or cancer.gov .