← Return to Giving hope: 5 year celebration pancreatic cancer-free

Discussion

Giving hope: 5 year celebration pancreatic cancer-free

Pancreatic Cancer | Last Active: Aug 10, 2023 | Replies (41)
Comment receiving replies
@gamaryanne

Absolutely must advocate for ourselves. I was pronounced NED and it feels like all doctors in my life have disappeared. I do have follow up appointments but I somewhat feel I am in a “wait and see” loop.
So I am trying to arrange consults with Mayo, MSK and John’s Hopkins. So far have appt at JH. I have a great surgeon but I need second opinions on how to be proactive now. My oncologist feels so nothing right now but surveillance. Just not aure I am comfortable with this…

Jump to this post

Replies to "Absolutely must advocate for ourselves. I was pronounced NED and it feels like all doctors in..."
gardenlady1116 | @gardenlady1116 | May 30, 2023

Second opinion at an expert center seems like a really great idea.

VIEW AND REPLY
patti303 | @patti303 | May 31, 2023

I can so relate to your post (I had a resected PDAC w/KRAS mutation). My 20-month scan showed NED and my oncologist thought it was a waste of time to try Natera's blood test for ctDNA or even continue with my monthly blood tests (CA19-9 doesn't work for me, but I want to keep an eye on glucose and other measurements). He did order a 24th month scan, but since I've been the one requesting scans every four or five months, I'm not clear if it was because I asked for it or he recommended it.

I also like the posts recommending follow-up DNA testing. Haven't done that yet, but I'll look into it.

Can't help but wonder if it's the individual doctor or the facility's approach to pancreatic cancer patients since our stats are so discouraging? When I look around the internet, I see a tremendous amount of testing and research in the works. To my eye, there are a lot of very smart people who are passionate about finding a cure for us along with the charitable contributions to help. I see plenty of evidence that it's worth self-advocacy and being proactive. The discouraging aspect is (for many of us) we are simply left to try and navigate a system we were never prepared for.

VIEW AND REPLY