I remain one of the 99%; however, i now also belong to the 9% of those who have survived pancreatic cancer. I survived because I challenged my initial ‘gatekeeper doctor’ to DEMAND that she order magnetic resonance cholangiopancreatography (MRCP) (1) on me which finally revealed my tumor.
I am here to tell you that you can beat this most dreaded of cancers if you catch it early, educate yourself, and learn to be a strong self-advocate. Early detection is key as it opens up the option of lifesaving surgery.
In the spring of 2020 just as the Covid19 pandemic was beginning its savage march across the United States, I noticed a nagging pain and tightness across my midriff front and back. It felt like a tight three-inch belt. It was worse after I ate. It was especially painful over my left upper quadrant for which Tylenol did nothing so I resorted to ice bags. My stools were lighter in color and floated. I could feel a spasm running along below my left ribs.
- Close relative with pancreatic cancer. 10% to 15% of people with pancreatic cancer have an immediate family member who also has/had it.
- Genes. Germline mutations in BRCA2, PALB2, ATM, or PRSS1 are associated with an increased risk of pancreatic cancer. Mutations in the p16/CDKN2A gene have also been linked to pancreatic cancer.
- Diabetes. Patients diagnosed with type 2 diabetes after the age of 50 have a 6 to 8 times increased risk of developing pancreatic cancer within 1 to 3 years of diagnosis.
- Smoking. Cigarette smoking increases the risk for pancreatic cancer.
- Obesity and inactivity. Obese individuals (body mass index, BMI, of 30 or higher) are more likely to develop pancreatic cancer, according to a study of 88,000 nurses. Those who exercised frequently were about half as likely to get pancreatic cancer, compared to those who did not exercise at all.
- Pancreatic cysts and chronic pancreatitis. People who have one or both of these conditions are at higher risk of developing pancreatic cancer. (National Cancer Institute. SEER data. Cancer Stat Facts: Pancreatic Cancer.American Cancer Society. Pancreatic Cancer Risk Factors.)
I had two or three of these risk factors. (Note that the cause of pancreatic cancer is unknown at this time. The above factors are statistically shared by those who are diagnosed.) If this list gives you pause, you can take this short risk assessment quiz and/or speak to your doctor. Being aware is being forearmed. A new test is recently available to those who are at increased risk of developing pancreatic cancer. It is not a screening test for the general public at this time but for those who fit certain criteria determined by a doctor.
Important Note: The lack of early detection drives the high mortality rate of pancreatic cancer. While it is the responsibility of the patient to seek medical care when symptoms appear, it is the physician who must overcome their own implicit bias or ‘healthcare shortage’ mentality in order to resist the temptation to treat these patients conservatively when they present with symptoms.
Had I not advocated for myself by discovering and insisting upon the definitive imaging test, I would not be alive to write this.
Being a retired registered radiologic technologist, i had an advantage in dealing with the current medical system. I spoke the same language; however, I understood how it worked and knew how implicit bias had been feeding the phenomenon of the health provider as ‘gatekeeper’ of medical care itself. I was a seventy-year-old woman who was on Medicare. It may have seemed kinder to send me home for months and then do another blood test. My main advantage was that I had worked long years at the side of physicians and knew them to be no gods. This knowledge gave me the freedom to question and challenge my initial doctor’s judgement.
The MRCP(1) imaging was not dreamed of when I retired from radiology. My decision to educate myself turned up the test which would image the pancreas. (Note: An ultrasound is basically a ‘placebo test’ for pancreatic problems because the ribs overlay the body and tail of the organ blocking visualization.) So even if you do not have a medical background, you can still educate yourself.
After the MRCP(1) demonstrated the small tumor pressing against the pancreatic duct causing it to go into painful spasms, I was handed off to a gastroenterologist who possessed the skill to do an endoscopic retrograde cholangiopancreatography ERCP (2) which confirmed the MRCP results. He referred me to Oregon Health and Sciences University Hospital OHSU to my beautiful surgeon whom I love for saving my life with a RAMPS surgery.
After that, I received state-of-the-art advances in pancreatic cancer chemotherapy by the Pastega Regional Cancer Center. My CA19-9 is down around 10. My energy is back, and I am looking forward to the remainder of my life with optimism. I got the tee-shirt.
This process was not easy by any means particularly during the pandemic. There was one memorable midnight ambulance ride up to Portland on our only icy streets of the winter and a couple nights holed up in the OHSU Emergency Department when there were no beds to be had. However, on this World Pancreas Cancer Awareness Day, I wanted people to know that it is possible to win against the monster that is pancreatic cancer. Want to know more or help spread awareness? Check below the line.
- Magnetic resonance cholangiopancreatography (MRCP) is a special type of magnetic resonance imaging (MRI) exam that produces detailed images of the hepatobiliary and pancreatic systems, including the liver, gallbladder, bile ducts, pancreas and pancreatic duct. (www.radiologyinfo.org/…
- Endoscopic retrograde cholangiopancreatography, or ERCP, is a procedure to diagnose and treat problems in the liver, gallbladder, bile ducts, and pancreas. It combines X-ray and the use of an endoscope—a long, flexible, lighted tube. www.hopkinsmedicine.org/…
Want some ideas on how to participate in World Pancreatic Cancer Day? Below are five things you can do to show your support for the cause.