After Carolynn Kiel lost her mother and sister to pancreatic cancer within the same year, her doctor recommended she get screened annually for an early detection marker for the disease. Even though she thought her physician was being overly cautious, she decided it was better to be safe than sorry. One year later, that screening resulted in an early diagnosis of pancreatic cancer that she believes helped save her life.
What many people don’t realize is that 10 percent of pancreatic cancer patients have a family history of the disease. In fact, the risk of developing pancreatic cancer more than doubles if a person’s mother, father or sibling had the cancer. Now, 13 years after her diagnosis, Carolynn wants to help raise awareness of how screening in high-risk individuals can help save lives, by sharing her family’s journey with pancreatic cancer.
When did pancreatic cancer first impact your family?
My sister Marilyn was diagnosed with pancreatic cancer in 2000. She was 58 years old, 11 months younger than me, and had flu-like symptoms that wouldn’t clear up. At the time, pancreatic cancer was a mystery to our family. The only person we knew who had pancreatic cancer was Michael Landon of Little House on the Prairie. Then my mother was diagnosed with pancreatic cancer about a year later after we noticed she was losing significant weight. My mom’s cancer was more advanced than my sister’s when she was diagnosed, so she lived only about two months after diagnosis. Then, just a few weeks later, my sister died as well.
Did that family history with pancreatic cancer change how you managed your health?
I thought our family was done with pancreatic cancer, but my primary care doctor said I should start getting tested annually for an early marker of pancreatic cancer called CA19-9. So I first got a blood test done looking for early signs in April 2003. That test came back negative. A year later, the CA19-9 marker came back positive, and a follow-up endoscopy led to my diagnosis of pancreatic cancer. I was mad. I said, “This isn’t fair!” I couldn’t believe that this disease affected the lives of so many people in one family.
CAROLYNN KIEL’S MOTHER (PICTURED ABOVE) WAS DIAGNOSED WITH PANCREATIC CANCER IN 2001 AND PASSED AWAY ABOUT TWO MONTHS LATER. HER DEATH SPURRED CAROLYNN TO BEGIN ANNUAL PANCREATIC CANCER SCREENING, WHICH RESULTED IN AN EARLY DIAGNOSIS.
How did that early diagnosis affect your treatment?
We caught the disease early, so I was lucky to be a candidate for surgery. It is called the Whipple procedure. Only 20 percent of patients are eligible for the surgery. I was “lucky,” but that doesn’t mean the treatment was easy. The Whipple procedure is like going to hell, but you get to come back. It’s brutal. Getting through it requires a positive attitude and determination. I needed people to talk to, people who were going through the same thing as I was, and I found a pancreatic cancer support group. It made a significant difference in my life. So now, 13 years later, having survived my battle with pancreatic cancer, I make the time to talk with any pancreatic cancer patient who needs someone.
Do your other family members get screened for pancreatic cancer annually?
I worry about my daughter and sister. They’re tested once a year with the CA19-9 blood test and get annual checkups. With any cancer, early detection is the most important thing. Pancreatic cancer is so sneaky that by the time you have the symptoms, you’re already far along. The CA19-9 test isn’t something that’s included with regular blood work, so it’s important to check for it if you have a family history of pancreatic cancer. The CA19-9 marker is not perfect, but it is elevated in most people with pancreatic cancer. It’s one of the best things that we have right now for early detection.
CAROLYNN KIEL (FAR LEFT) AND HER FAMILY HAVE BEEN IMPACTED BY PANCREATIC CANCER. HER SISTER MARILYNN (LEFT) AND HER MOTHER (RIGHT) BOTH PASSED AWAY FROM THE DISEASE IN 2002. HER DAUGHTER STACY (FAR RIGHT) GETS ANNUAL SCREENING FOR THE DISEASE.
There are ongoing studies and registries for individuals with a family history of pancreatic cancer to understand the genetic components of this disease better. Have you participated in any of these?
My daughter, sister and I had blood work sent to the National Familial Pancreatic Tumor Registry at Johns Hopkins probably 12 years ago. The information and blood work will help researchers determine the genetic and non-genetic risks for pancreatic cancer. It may help improve early detection, so more people can have a better shot of surviving like I did. I want to do anything that helps others. My attitude is that if there’s a slight chance it will help, then I will do it. What would stop anyone from helping out if they could?
What advice do you give people who are newly diagnosed with pancreatic cancer?
I tell people who are newly diagnosed to get a second opinion about their proposed treatments and even about their diagnosis. I also pass along advice given to me by my surgeon, which is not to go to a neighborhood hospital or a general surgeon for a Whipple procedure. Go to a surgeon who specializes in Whipple procedures. I also tell those same people to make sure their children and siblings get annual screenings. Early detection helps a lot with this disease.
To learn more about how patients cope with pancreatic cancer, read “Facing Each Day with Pancreatic Cancer, Hand-in-Hand.”