Decided not to have surgery. What’s next?

Hi Marcia - I have read your story and offer my sympathies for what you are experiencing. Coincidently, my wife of 70 years old and is experiencing very much your story; PC diagnosed October 2023, Stage 3, locally advanced with vascular involvement. multiple rounds of FOLFIRINOX at Methodist hospital in Minneapolis area, followed by GEMCITABINE. Surgery referred to Mayo Rochester (Dr. Truty) and oncology team. Completing 3rd week of chemo radiation at Mayo. Tumor marker has subsided to normal range, FDG uptake and size of tumor slightly reduced. We've had the frank conversation with Dr. Truty, who is willing to take on surgery removing pancreas, spleen, gall bladder, etc; tentatively scheduled for June 5 2024. Currently attempting to decide on quality vs. quantity of life and in search of any and all information to make that decision. How are you feeling? What have you learned since making your decision. Would like to talk. Sincerely, drh

That is exactly my story! Except mine was found October 22! Dr Truty was happy I chose to forgo the surgery. I am 61 and I wanted to be able to spend time with my grandchildren. From what I understand Pancreatic cancer cannot be healed. It will metastasis. If I had the surgery I wouldn’t have the strength to go through chemo. It is now my lungs so I’m back to chemo. What Dr do you have at Methodist? I have Dr Sherman. I have Dr Carr at Mayo.

Marcia - It appears we are on the same path. So sorry to learn the cancer is back. Our oncologist at Methodist is Dr. Eidenschenk. We are assigned to Dr. Carr at Mayo in oncology, but have only met with him one time. We have met several times with his nurse practitioner. Dr. Truty is the surgeon. We have met with him 2 times, the last time advising us he would perform the surgery if chosen - however he was frank about the risks during and post surgery recovery. The radiation oncologist is Dr. Hallenmeir. We are meeting all of them this week during the third week of chemo/radiation. The objective is to ultimately decide on surgery or alternative care. My wife is a strong 70 year old woman who has a good chance of surviving surgery...but are seriously searching for an alternative. Any suggestions for alternatives to consider would be much appreciated. Thank you, - Doug

@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

So sorry to hear that Warren. I don’t knows why but my CA19-9 has been in good range since I started folfirinox last year. They stopped the irinatican right away because my throat started to close. It’s nice to chat with others that are going through the same things.

Warren - I read your note with sadness. I wish I had the solution...but like so many others are experiencing, the solution is elusive.

My wife and I are at Mayo this week, completing her 3rd week of chemo radiation. Over the course of the week we have met again with the team of doctors and nurse practitioners, as we (she) tries to make a decision on surgery. Recall, this is the aggressive surgery involving vessel reconstruction, removing spleen, gall bladder etc. which will no doubt result in adjustments to her quality of life. We have set a surgery date for June 25 but are second guessing the plan daily as we seek additional guidance. In discussions this week, we learned opting out of the surgery of this nature is more common than we assumed - perhaps 30-40 percent as suggested by our oncologist. I agree with Marcia, even thought we may not have the solutions, its nice to chat and share with others going through similar situations.

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.

Did the three others continue with chemo following surgery?

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.

It seems that way from my non medical professional view - chemo is really hard, but those that continue may have a better chance.