← Return to Recent diagnosis of pancreatic cancerous tumor - awaiting PET

Comment receiving replies

@marciakaye, based on your post, I looked into genetic testing and pancreatic cancer and found this article from Pancreatic Cancer Action Network
– New Study Encourages Genetic Testing for All Pancreatic Cancer Patients, Regardless of Family History https://www.pancan.org/news/new-study-encourages-genetic-testing-for-all-pancreatic-cancer-patients-regardless-of-family-history/

How might genetic testing have changed the treatment options for you? What do you wish you had known?

Jump to this post

Replies to "@marciakaye, based on your post, I looked into genetic testing and pancreatic cancer and found this..."

Maybe the genetic testing would not have changed anything. Maybe the treatments would have been the same. But if he had the testing and we found out additional information about his tumor maybe he could have received different treatments. Or rather more specific treatments. Maybe if we need he had certain mutations other chemo might have been more effective.

My husband did 10 cycles of Folfirinox. The 19-9 trended down but then starting increasing. So the doctors told us the tumor had adapted to Folfirinox and it was no longer working. So he started on Gemzar/Abraxene. Only did 1 cycle because of C-diff. So next up radiation with hopes it would still shrink the tumor and leave clear margins because the tumor was partially around an artery. It didn't. So 10 months ago we started with journey planning on surgery being the endgame. We didn't get that outcome.

We just got a 2nd opinion from Dr. Truty. He told us surgery would never be an option because of the location of the tumor. He recommended chemo again with hopes the 19-9 would respond. Now I'm looking for alternatives. I'm looking at drugs that have been re-purposed to help fight pancreas cancer. Some drugs are showing promise in breaking down the walls around the tumor and therefore making chemo more effective. Some drugs are showing promise by interfering with the way the tumor grows or inhibiting the growth.

I just drove home yesterday from Mayo Clinic in Rochester, MN. It was a long 10 hour drive. We are waiting for biopsy results. Our heads are filled with "what-next" thoughts. Yes, my husband is scheduled for chemo this week. That is next. But I feel like more needs to be considered. I'm overwhelmed with the options and not sure where to start. I'm looking for a medical oncologist that will help us look at options other than the standard treatment. Or options on how we can enhance the standard treatment. I'm looking for a progressive medical oncologist that will help us look at clinical trials and address my husbands needs moving forward. I'm also looking at how to get a liquid biopsy if the needle biopsy at Mayo comes back benign. I'm praying for much needed direction and guidance. I feel like the trip to Mayo was a Hail Mary that didn't pan out. We learned some things but my husbands prognosis doesn't look good to us right now.

I was only recently diagnosed but. The doctor wanted me to talk to a genetics counselor. I filled out a questionnaire on family history etc. The lady called me yesterday and we went over everything. So when I go in for surgery they are going to draw blood for the genetics testing. There is no history of pancreatic cancer in my family (as far as I know) And only very few family members who have ever had cancer. . Should be interesting to see what it shows. She said it takes about three weeks to get the results.

  Request Appointment