What my grandma would want you to know about her battle with Stage IV pancreatic cancer

Nov. 19 is World Pancreatic Cancer Day
Pancreatic Cancer awareness

MADISON, Wis. — Thanksgiving Day just isn’t the same without Grandma.

That’s the first reason I’ll always remember the holiday in 2016. No, it’s not because Grandma’s homemade cranberry sauce wasn’t sitting in its prime position beside the turkey. Or because her cheesecake wasn’t on the dessert table. It wasn’t even because no one else asked if I wanted seconds, thirds, or fourths at dinner and made me believe that yes, I really did need that extra piece of garlic bread.

It was simply because that Thanksgiving was the first holiday Grandma wasn’t with us, and it just felt strange.

At the time, my grandma was still very much alive. She just wasn’t up for the two-hour drive to my aunt’s house in Iowa. She had a stomachache. We shrugged it off: a stomachache. Mom stayed behind to keep Grandma company. The rest of the family knew we’d see her in less than a month for Christmas. Then, everything would be back to normal.

We were very wrong.

That “stomachache” turned out to be Stage IV pancreatic cancer. Doctors shared the grim diagnosis after three weeks of tests. At the time, Grandma was 81 and, otherwise, healthy. She can fight this, we all thought.

Once again, we were very wrong.

Grandma died on January 10, 2017, less than two months after her Thanksgiving “stomachache” and less than one month after her official diagnosis. Losing my grandma forever changed my life, and I know I’m not alone.

Every year, more than 50,000 Americans will find out they too have pancreatic cancer. It’s the third-deadliest form of cancer, according to the American Cancer Society. And it’s already the second-leading cause of all cancer deaths in the state of Wisconsin.

Here are some of the things I learned from my grandma’s battle with the disease:

The phrase “Stage IV pancreatic cancer” is misleading. 

Stage four means the cancer has metastasized and spread to other organs. It is no longer confined to the pancreas. The American Cancer Society says pancreatic cancer often spreads to the abdomen or liver first, before reaching the lungs, bones, or brain. By the time pancreatic cancer becomes metastatic, doctors can no longer treat it through surgery, only chemotherapy. Chemo can help control and contain cancer, but it usually isn’t a cure. That’s what makes Stage IV pancreatic cancer so deadly.

People don’t usually notice symptoms until the cancer has spread outside of their pancreas.

That’s one of the biggest problems when it comes to diagnosing and treating pancreatic cancer. Once it’s spread, symptoms can still be vague: stomachaches, heartburn, and back pain are some of the most common. Other times, there may be no symptoms at all, until a person suddenly develops fatigue, loses weight, or shows signs of jaundice, a yellowing of the eyes and skin.

Another problem with pancreatic cancer is that there’s currently no screening test for it. 

While there’s the PSA for prostate cancer and the mammogram for breast, pancreatic cancer doesn’t have any exam for early detection. That’s why only 10 to 15% of patients are diagnosed while the cancer is still contained in their pancreas. The location of the pancreas also makes the possibility for screening difficult: it’s nestled deep in the body and surrounded by lymph nodes and blood vessels.

There are reasons to remain hopeful.

Thanks to the fundraising efforts of organizations like the Pancreatic Cancer Action Network, PanCan for short, researchers are learning more about the disease and are making some progress. Researchers now know that up to 5% of all cases are hereditary, so they are providing genetic testing to families who may be at risk. In recent years, they’ve learned that people with a new diagnosis of Type 2 diabetes or depression have a higher-than-average risk of being diagnosed with pancreatic cancer. And while oncologists used to measure patients’ life expectancies in months, many are now measuring them in years.

UW Health’s Pancreas Care Clinic is leading the fight for better treatment and early detection.

The Pancreas Care Clinic is one of Madison’s newest innovations for treating patients with pancreas conditions. It’s made up of two distinct clinics: the Pancreas Mass Clinic, which opened last fall, and the Pancreas Cancer Prevention Clinic, which opened at the start of the pandemic. Both clinics are staffed with approximately 30 providers: from medical and surgical oncologists to gastroenterologists, clinical geneticists, and radiologists. These experts work together in teams to develop individualized treatment plans to prolong patients’ lives and minimize their side effects.

Nov. 19 is World Pancreatic Cancer Day.

More than just a day, Thursday is an opportunity to raise money and awareness for a deadly disease. 950 Wisconsinites are expected to die from pancreatic cancer by the end of the year, and 1,100 more are expected to be diagnosed. In their honor, and for all of our futures, PanCan is encouraging everyone to wear purple and share their reason why.