My cancer returned after 2 1/2 years: Nervous removal of pancreas

Mine also returned after Whipple surgery and 12 folfirinox treatments. My oncologist started me on Gemcitibine and abraxane. I have had 12 treatments with that and am now scheduled to start radiation combined with oral capecitibine chemo pills. They have been very clear this is an aggressive treatment in hopes of controlling the growth/spread but is not a cure. I have been able to handle all treatments so far -and view the side effects as a small price to pay for being alive! All the best to you!

I was diagnosed stage IV Mets in liver, 2021. 14 rounds of fulfurinox got my tumor marker to normal and shrunk or killed everything to the point where surgery made sense. I had a pancreadectomy and liver resection. In June scans showed a small recurrence. Immediately went on Gemzar. Tumor marker got to 29 so back to surgery this week! I’ve never stopped working; just calendared days each month I needed to “go under the radar”.
I am sore but I feel great. 23 months now and thriving. Labels are not death sentences they are just labels. I realize now I will have scanxiety every three months but in between I plan to keep myself healthy, active, and will choose joy.
I don’t think any cancer club is one you join and engage a treatment that is one and done. We are not alone. There will be recurrences if your stage was progressed but the sooner we know the sooner we can address it. Thankfully I have an incredible care team that is willing to think out of the box. If you don’t have that, you must find it!
Xoxo

I really like your attitude! So many people said “oh” like too bad when they heard I had pancreatic cancer. It has such a bad rep. But they are advancements and I’m happy to be alive too! My dad died within 8 months when he was diagnosed with stage 4 pancreatic ca. I got diagnosed at stage 2 and am trying to live life to the fullest. My CA 19-9 is 6 and it’s been 4 months since I finished chemotherapy following distal pancreatectomy. Why did you go for surgery with 29? Up to 37 is considered normal. Best of luck to you!!

Because I wanted those tumors out!

Ok I get it now. You had tumors and a normal antigen level! This discussion emphasizes to always be on guard (“yet live life to the fullest”).

My pc has returned and they feel my only hope of the complete removal of the pancreas. Has anyone had this procedure? Very nervous

I hope the "they" you refer to is at a pancreatic center of excellence.

I've not had a total pancreatectomy, but wish I did. My post-Whipple recurrence was at the original surgical site. If I'd had the entire pancreas removed, there would have been no issues with margins and no pancreas tissue to turn malignant afterward.

When my recurrence was first discovered, one surgeon said he could remove the rest of my pancreas, but wanted me to do some chemo first. I talked to another surgeon a few weeks later. He would have removed it immediately, but discovered mets on the scan and ruled me out.

Without a pancreas, you'll definitely be dependent on enzymes and insulin for the rest of your life. I already was, so I figured there was nothing to lose. Enzymes & insulin aren't cheap, but are usually covered by insurance, and are very manageable compared to a lifetime of chemo (on top of enzymes and insulin).

I haven't read any recent/modern studies on Whipple vs "repeat Whipple/revision" vs total pancreatectomy. I got the impression from older studies that it may have been a wash -- no obvious conclusions supporting one approach over the other. (Disclaimer: I have no medical training, and only remember scanning one paper about it.)

There *might* be less difficulty reconnecting your plumbing if they're not trying to preserve part of a pancreas. Worth asking about complications and options.

I guess the big difference is how confident they are the cancer is limited to your pancreas. The surgical mindset seems to be aimed at sparing the patient a complicated surgery and recovery if there's a good chance of disease spread anyway. I'd let them amputate my head if it had a high chance of eliminating cancer from my future.

If you do have the surgery, make sure they save enough tissue to have cells available in case there's a future treatment option that uses them. If you appear clean for a few months after the surgery, you *might* qualify for the mRNA vaccine trial at MSK and a few other sites.

If there is spread after the surgery, or if you opt out of the surgery, I recommend investigating other clinical trials for the various immunotherapy and targeted therapy treatments as soon as possible.

Hope this helps, and I hope you'll share whatever else you learn. Wishing you the best!!!

Thank you for responding, my husband and I are so nervous but just talked to dr and have no other choice. Having another ct scan there might be a block to the main artery so will have to see. I definitely will share all of my treatment plans and the success and problems. Thank you so much

An arterial blockage - caused by the pancreatic cancer?

Are you at a center of excellence? Can you be admitted to one - relocate if necessary. If possible please do this.

I have a ct scan on Monday to look at that artery.
I feel confident at the Cleveland Clinic.
Have you had removal of the pancreas