Decided not to have surgery. What’s next?

No. None of us had chemo after surgery. Which I think is not the correct treatment plan. I was told clear margins, no lymph nodes, complete pathological response. Thus no need for additional chemo. I asked 3 oncologists, and all said no chemo needed. Seems for PC, every patient should do adjuvant chemo following surgery due to high likelihood of micrometastasis.

Does anyone have a citation for independent studies related to continuing vs stopping chemo following Whipple?

There are so many stories of being declared NET and then mets - without follow-chemo.

If I had to make a decision for myself, I would continue chemo.

I absolutely agree with you. And all but begged for chemo. But was told no. I will see if I can find some studies to cite.

@drhmch
Doug - Like you, my wife and I are searching for alternative treatments, although my history is different.
I was diagnosed Stage 1 Pancreatic Adenocarcinoma at the head of my pancreas one year ago. Following diagnosis I travelled from Alaska to Mayo/Rochester for additional testing, bile duct stent replacement, and exploratory abdominal laparoscopy with peritoneal wash. My CA 19.9 was about 650. Beginning early June I began a planned 8 cycles of Folfirinox. My severe reaction to Oxaliplatin during my 4th cycle, ended chemo with Folfirinox. My CA 19.9 levels fell to a low of 43.... so Folfirinox was working. Within a week or two I then had to have a 3rd ERCP and have my common bile duct repaired/covered. I then had 3 cycles of Gemcitabine/Abraxane (no Cisplatin) before returning to Mayo for 3 weeks of radiation treatments. The Gem/Abrax treatments preceding radiation were not as effective as the earlier Folfirinox chemo. Following completion of radiation in early December I was scheduled for a modified laparoscopic in January, However, though my imaging looked very good, my surgery was postponed for a month due to elevated CA 19.9 (169). I returned to Mayo in late February but the CA 19.9 was still elevated (171). I was given the option of going ahead with surgery at that time or resume Fulfirinox without Oxaliplatin for two months. We elected the chemo option and returned to Mayo yet again to find out that though PET and CT imaging results were still good, the cancer had metastasized to the liver (several small lesions, all less than 1cm in size) and CA 19.8 levels had risen from 171 to 747 in 8 weeks. Surgery is now off the table, as is further radiation treatment. The Gemcitabine/Abraxane chemo option is there, but it was not effective earlier. My prognosis now is very poor (life expectancy per the oncologist is 4-6 months).
What to do? we are looking at alternative therapies but most to me seem unlikely to be helpful, much less curative. I'm open to suggestions from one and all as we search for new ways to beat this nasty aggressive disease. My wife thinks we can slow the metastasis through diet and nutrition as she diligently pours over a variety of literature looking for help/answers,
I'm glad this thread is back in play Thanks Doug and Marcia for reengaging. Hoping to hear more from the both of you... and others. Warren

No. None of us had chemo after surgery. Which I think is not the correct treatment plan. I was told clear margins, no lymph nodes, complete pathological response. Thus no need for additional chemo. I asked 3 oncologists, and all said no chemo needed. Seems for PC, every patient should do adjuvant chemo following surgery due to high likelihood of micrometastasis.

My surgeon strongly recommended chemo post surgery… at least 6 rounds of it.

After you were initially diagnosed stage 1, why didn’t you get a Whipple surgery immediately after diagnosis before the cancer spread?

I have to say I am a bit surprised by the 30-40% who opt out of surgery. I think for all of us we just want to get to surgery, thinking that is our only chance to beat this. But clearly, with such high recurrence rates we know that is not the case. I opted for Truty surgery. Same as your wife. Locally advanced stage III with vein involvement. Opting out never crossed my mind. And yes, Truty is very frank about quality over quantity of life. I had surgery July 24, 2023. My pre surgical scans showed no active tumor and my CA19 was 12. I have to say I have definitely questioned if I made the right decision. Recovery was rough, and battling diabetes and Creon and daily GI issues has been extremely difficult for me. I was diagnosed at age 39. Surgery at 40. And in very good shape, physically. I met 3 other women having surgery with Truty last year, and they have all 3 had recurrences. We are currently watching lung nodules in my scans. I am not sure what I meant when posting this. I just want to say it is a very difficult decision to make. And absolutely will affect quality of life. But to me, it is LIFE. I have 2 kids in elementary school, so quantity over quality was my goal. I am 9.5 months out from surgery, and each day is better. I am back to running and lifting weights. And the GI stuff cant take years to balance out. I pray daily that I have those years in me. Best of luck to you and your wife, whatever decision is made.