Abort chemo Rx & go straight to surgery while I am still Stage 1?

Posted by mbcfl @mbcfl, Oct 28, 2023

I was very fortunate in how my stage one pancreatic cancer was diagnosed. In August 2023, I had an unrelated intestinal surgery and three weeks later I developed a fever and pain. So I had a CT scan September 11, which showed an abscess from the prior surgery and also showed the presence of a 1.4 cm pancreatic tumor in the neck of the pancreas. Follow up CT on 9/13 and MRI imaging on 9/26 of the 1.4 cm lesion showed total containment without vascular involvement. The recommendation was NeoAdjunctive therapy followed by surgery. I was started on Gemzar/Abraxane, three weeks on, one week off, starting 9/29/23 in Cincinnati, Ohio, where I am currently residing.
We are actually Florida residents, so after completion of the first chemo cycle, flew down to Tampa for a second opinion at the Moffitt Cancer care center in Tampa. We were seen by their surgical and medical oncologist on October 18, 2023. This was the day after they repeated labs, did another CT and pet scan. The pet scan was negative, but the CT scan now showed that there was contact between the lesion, measured at 1.8 cm, , and 2 veins underneath, and there was branching that was less than 180°. So in just three weeks this was a new finding but the cancer itself was still contained in the pancreatic neck.

The initial Ca 19-9 was 345 on 9/13/23, then 575 on 9/29/23 in Cincinnati.
Mayo measured it on 10/17/23 as 745.
So it is rising very rapidly, despite 1 cycle of Gemzar/Abraxane.

My medical oncologist in Cincinnati repeated it yesterday. His thinking is if the tumor marker is not going in the right direction to either change chemo to FOLFIRINOX, which would increase chemotherapy duration to mid December prior to next surgical consult at Moffitt . Which will delay the surgery until at least mid to late January. The other option is to discontinue chemo now and wait the required 4+ weeks to proceed with surgery which would be around late November. The tumor is located in the neck of the pancreas, and directly underneath is an intersection of blood vessels . Moffitt has already informed me if I stick to the current plan, they would repeat the CT in December to see IF I still am a surgical candidate. I NEED TO BE A SURGICAL CANDIDATE!!!
So to me it seems my best option is to stop the chemo and get the surgery done ASAP. The surgical oncologist at Tampa is rated very highly. He has been doing the procedures for 20+ years. However, he only does an open approach. My surgical oncologist in Cincinnati is younger and has 9 years of experience. He seems very knowledgeable and well respected. He says he does 52 pancreatic cancer surgeries per year, and that he would do it robotically. According to PanCAN, University of Cincinnati performs 150 pancreatic cancer surgeries on an annual basis. I am sure it is much higher at Moffitt but have been unclear on getting exact numbers. According to the Moffitt website, they claim for stage one they can increase survival percentage from 40% to 60%.

So here are my questions regarding opinions: rather than trying the
FOLFIRINOX, which would delay surgery until mid or late January, IF I am still resectable by then, my thinking is to ask for surgery ASAP. Since I just began my second cycle with my first treatment yesterday of Gemzar/Abraxane, I suppose I would still need to wait four weeks before surgery. But I need to check with my medical and surgical oncologist about that, I guess.
I hesitate to switch to Folfirinox, as I know it is associated with a lot more toxicity, which would make it harder for me to regain my strength to get ready for an eight hour, complicated and arduous surgery. At the moment, I have done well with the side effects on my current regime. Most days I am eating well and most days I walk at least 30 to 60 minutes every day. So could continue to do this to prepare for the surgery.

My other question is regarding where to have the surgery done. opinions, please!
Would I be better off having it at Moffitt, which is a high-volume pancreatic cancer center, performed by a highly rated pancreatic cancer surgical oncologist, even though he only performs open procedures?
The other option would be to have it done at University of Cincinnati, with a younger surgical oncologist, who performs 52 robotic surgeries annually.

All of my oncologists in Cincinnati and Tampa are in agreement with additional chemotherapy being added after the surgery, probably three cycles within 8-10 weeks after surgery.

Any comments in a timely fashion would be much appreciated as my medical oncologist will be calling me on Monday with the latest CA 19- 9 results. Even if it has decreased, I don’t think that would affect my desire/decision to have the surgery done ASAP.
I have read online where you can go from stage one to stage four in a matter of months.
Thank you in advance for your comments!

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

@markymarkfl

Oops, I forgot to add a link to the Dr. Katz video:

The youtube player should start at the section where he's discussing CA19-9.

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Thx Mark😊

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Thank you for your good wishes. To answer your questions, there was no detectable disease prior to surgery. I had the surgery to remove a suspicious cyst, that only revealed cancer in the post-operative pathology report. So, no chemo before operation. Surgery was performed locally at Hartford Hospital. Thank you for the info on Texas trials.

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@wjk

Marilyn - This morning my wife found the following discussion at a Mayo Clinic link. The intended audience is medical professionals and the topic is "Optimizing outcomes for patients with non-metastatic pancreas cancer". The discussion was recorded in February 2023 and is up to date, as opposed to many similar presentations/discussions that are somewhat dated. The four physicians panelists are associated with the Mayo Clinic.

One's ability to understand and follow the discussion depends on extent of familiarity with medical terminology and pancreatic cancer. I post it here in the event it helps you in your immediate decision making, as well as to make others aware of this very helpful discussion. (As a former health professional [RN/MICParamedic] who left that career in the late 1980s, I can follow most but not all of the discussion.) Give it a look. It's quite informative IMHO.

https://medprofvideos.mayoclinic.org/videos/optimizing-outcomes-for-patients-with-nonmetastatic-pancreatic-cancer

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Thank you so much. This video is excellent for those with early stage (nonmetastatic) disease. I spent several hours watching, looking up some terms and taking notes.
My takeaway is chemo and radiation therapy first and postpone (or forego) Whipple unless or until scans and biomarkers indicate expected outcome of surgery outweighs the burden of this surgery.

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@susan4

Thank you so much. This video is excellent for those with early stage (nonmetastatic) disease. I spent several hours watching, looking up some terms and taking notes.
My takeaway is chemo and radiation therapy first and postpone (or forego) Whipple unless or until scans and biomarkers indicate expected outcome of surgery outweighs the burden of this surgery.

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Welcome, @susan4. Have you recently been diagnosed with pancreatic cancer?

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