“We are asking you to take part in this study because you are at higher risk compared to the general population for developing pancreatic cancer, based on your personal or family history.”
They’re talking to me. And maybe you. If you are a carrier of either a BRCA1 or BRCA2 genetic mutation, then you too may have an elevated lifetime risk of developing pancreatic cancer. It’s thought that the increased risk is very small, but being a BRCA2 carrier AND having lost my father to pancreatic cancer has me thinking I could have just too many risk factors lined up against me. So I’m taking part in two studies at H. Lee Moffitt Cancer Center in Tampa. In case you’re interested in looking them up, one is called “Protocol for High-Risk Assessment, Screening and Early Detection of Pancreatic Cancer” and the other is called “Total Cancer Care Protocol: A Partnership with High Risk and/or Diagnosed Cancer Patients for Life.”
Pancreatic cancer is a rather silent killer, typically not diagnosed until is has become advanced, by which point it’s very difficult to cure. The purpose of the first study is to evaluate Endoscopic Ultrasound as a tool for detecting early-stage pre-cancerous or cancerous changes in the pancreas in people at high-risk for developing pancreatic cancer. The purpose of the second study is to study participants’ genetic material combined with their clinical data, in hopes of identifying genetic changes that are associated with particular types of cancer. The way I see it, the first study could help me in my efforts not to follow in my father’s last footsteps and the second study will hopefully benefit humanity.
I had my first Endoscopic Ultrasound and already I’m experiencing that double-edged sword that is medical knowledge. They discovered a cyst in my pancreas. Were I not participating in this study, I would either never know I had a harmless pancreatic cyst, or by the time I found out, it’d be something much worse than a benign cyst, namely a tumor. So by participating in this study I am either causing myself a whole lot of unnecessary worry, or I am potentially saving my life. That is in fact the fine line walked by those of us genetically predisposed to cancer. Knowledge is power when it is complete and you can act upon it, a mental-emotional curse when it leaves more questions than answers.
Most pancreatic cysts are not cancerous, so I’ve learned, but they can be. So, the next step is to repeat the endoscopic ultrasound in 3 months. If it has grown to 1 cm, they will biopsy it (at 7mm, it’s currently too small to biopsy). If it has not changed, they will do an MRI in 6 months to follow it.
Stay tuned… it will be a few months before I know anything more. My desire to find out more about pancreatic cysts, benign and not-so-benign, ebbs and flows as my emotions roller-coaster between calm optimism and the panic that comes with my genes.
Know anything about pancreatic cysts, BRCA mutations and pancreatic cancer risk, or BRCA anxiety? Please share… I suspect I’m not alone.
Susan Beausang, 4Women.com