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.

@mbcfl

From this 70 year old gal, I thank you for sharing!
I agree with you, it is pretty much rolling the dice…
The statistics say that even after surgery, there is a 75 % risk of recurrence, but if that is the hand we have been dealt, I need to play it . I just don’t want to risk not having the surgical option since that’s the only shot for a longer survival/cure.
Have they said they will have to do some reconstruction of your veins for you? What is the degree of branching - is it greater than 180°?
Do you mind sharing how large your tumor was at initial diagnosis?
I wish you the best and apparently there is no place better for you to be than Mayo.
Moffitt’s Cancer Center in Tampa Florida is in the top 10 so hopefully that will be good enough for me🤞
Good luck to us both!
Marilyn

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In reply to your questions, see these two excerpts from my late May CT scan results.

Vascular Contact - "Conventional hepatic arterial anatomy. The mass does not make contact with the celiac, common hepatic, or superior mesenteric arteries. The mass makes less than 180 degrees of contact with the superior mesenteric vein, causing subtle tethering of this vein."

Size of Mass - "3.8 x 3.1 x 2.7 cm. The mass previously measured 2.3 x 2 cm (series 3 image 29 of the comparison scan)."

This from my most recent CT Scan interpretation of 3 weeks ago: "Slight decrease in size of the mass in the pancreatic head/uncinate process with unchanged abutment of the superior mesenteric vein."

In sum, in my situation, my neo-adjuvant treatment has been positive to date. My tumor has shrunk somewhat, no further entanglement of large veins/arteries, no indication of metastasis, and biomarker levels have fallen significantly.

Indeed... good luck to us both. I'm curious to see what you decide tomorrow and what path you follow. Thanks.
Warren

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I’d go to Moffitt given your options. Vein involvement requires a good surgeon. You need margin from vein for survival. Ask surgeon their approach to vein involvement - some won’t do surgery and some will - that may dictate your decision for you. I had open surgery, 8 folfirinox before surgery with four week break. Infection during surgery prevented post surgery chemo - would did not heal. Vein was bisected during surgery.

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Here was my situation when diagnosed in 2012. The CT showed the tumor in the head of the pancreas very close to the portal vein. The surgeon said I had a small window of opportunity and he was prepared to do the Whipple the next morning-a Saturday. I was at a high -volume center in NYC and my surgeon at that time had done over 1500 Whipple surgeries and in addition performed liver transplants so he was trained as a vascular surgeon and proficient at handling vascular involvement.

When I was open up and examined, it was noted the tumor was in contact with the portal vein. A portal vein resection was done and the surgical pathology revealed the tumor had penetrated completely through the vascular wall. A week after the Whipple, a post surgical CT was done and found metastatic disease was present. It was not seen two weeks prior because it was too small to be detected and the resolution of a CT in 2012 was about 4-5mm whereas today it is 1.3mm. So because I just had surgery, I had to wait 8 weeks to heal to begin chemotherapy. That meant no treatment of the metastatic disease and to make things even worse, when I did get chemo, I had no response to the first chemo regimen.

Had I been in the position to have neoadjuvant chemo and assuming I would have received Folfirinox, it likely would have addressed the micrometastatic disease when it is easier to treat. Neoadjuvant chemo has shown better outcomes. I could not do neoadjuvant even if was available in 2012 because the compression of the bile duct and the close proximity of the tumor to the portal vein made the situation “time is of the essence”. I was fortunate in the outcome of now being an 11 year survivor and N.E.D. after having stage IV disease. It required 46 cycles of adjuvant chemo with 24 cycles of full-dose Folfirinox and 22 cycles of 5-FU/Leucovorin in alternating groups of six cycles every 15 days for 24 months with no pause. It makes me wonder if I would have needed that much chemo to knock out the disease and achieve N.E.D. had neoadjuvant chemo been a possibility for me?

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@lvtexas

I’d go to Moffitt given your options. Vein involvement requires a good surgeon. You need margin from vein for survival. Ask surgeon their approach to vein involvement - some won’t do surgery and some will - that may dictate your decision for you. I had open surgery, 8 folfirinox before surgery with four week break. Infection during surgery prevented post surgery chemo - would did not heal. Vein was bisected during surgery.

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Thank you for your feedback. When you state “ask the surgeon what their approach is to vein involvement,” are you meaning to verify that they are willing to do vein surgery if needed? I believe the surgeon in Ohio and Florida both have told me that they would/could.
I’m sorry you had that infection during surgery. How long ago was that? Have you restarted chemo? How are you doing now?
When you say your vein was bisected, was that because only a small amount of tumor was found there and they were able to bisect it rather than having to have an entire portion of the vein removed and reconstructed ?

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@mbcfl

Thank you for your feedback. When you state “ask the surgeon what their approach is to vein involvement,” are you meaning to verify that they are willing to do vein surgery if needed? I believe the surgeon in Ohio and Florida both have told me that they would/could.
I’m sorry you had that infection during surgery. How long ago was that? Have you restarted chemo? How are you doing now?
When you say your vein was bisected, was that because only a small amount of tumor was found there and they were able to bisect it rather than having to have an entire portion of the vein removed and reconstructed ?

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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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@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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I look forward to watching it. So appreciate you sharing this with me, thank you!

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@stageivsurvivor

Here was my situation when diagnosed in 2012. The CT showed the tumor in the head of the pancreas very close to the portal vein. The surgeon said I had a small window of opportunity and he was prepared to do the Whipple the next morning-a Saturday. I was at a high -volume center in NYC and my surgeon at that time had done over 1500 Whipple surgeries and in addition performed liver transplants so he was trained as a vascular surgeon and proficient at handling vascular involvement.

When I was open up and examined, it was noted the tumor was in contact with the portal vein. A portal vein resection was done and the surgical pathology revealed the tumor had penetrated completely through the vascular wall. A week after the Whipple, a post surgical CT was done and found metastatic disease was present. It was not seen two weeks prior because it was too small to be detected and the resolution of a CT in 2012 was about 4-5mm whereas today it is 1.3mm. So because I just had surgery, I had to wait 8 weeks to heal to begin chemotherapy. That meant no treatment of the metastatic disease and to make things even worse, when I did get chemo, I had no response to the first chemo regimen.

Had I been in the position to have neoadjuvant chemo and assuming I would have received Folfirinox, it likely would have addressed the micrometastatic disease when it is easier to treat. Neoadjuvant chemo has shown better outcomes. I could not do neoadjuvant even if was available in 2012 because the compression of the bile duct and the close proximity of the tumor to the portal vein made the situation “time is of the essence”. I was fortunate in the outcome of now being an 11 year survivor and N.E.D. after having stage IV disease. It required 46 cycles of adjuvant chemo with 24 cycles of full-dose Folfirinox and 22 cycles of 5-FU/Leucovorin in alternating groups of six cycles every 15 days for 24 months with no pause. It makes me wonder if I would have needed that much chemo to knock out the disease and achieve N.E.D. had neoadjuvant chemo been a possibility for me?

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I had a distal pancreatectomy and splenectomy in July 2022, and cancer was found in the resected portion of the pancreas, but had not advanced anywhere else that was detectable. I had 12 cycles of Folferinox, and the cancer still ended up spreading to my liver. After six months of Gemzar/Abraxane, the liver tumor had still grown, and now there was lymph node involvement. Doctor stopped the Gemzar/Abraxane because it didn't seem to have an effect. I wonder if more chemo would have made a difference or not? I wonder how much time on a treatment is enough?

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