Decided not to have surgery. What’s next?

Posted by marcia @marciak9, Aug 9, 2023

I decided to not have the surgery in which Dr Truty at Mayo was going to remove my pancreas stomach and spleen. I guess I’m going for quality of life but will most likely be just a few years. Anyone else following that path? Any experience you can share? Anyone live longer than a couple of years?

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

After my Whipple in 2013, they wanted me to go to make sure whether or not I needed chemotherapy..as it turned out. I did not need chemo after several pet scans and CAT scans and so on. Of course everybody’s surgery is different and everybody for that matter are different, but all has been good since 2013 for me.

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Untreated PC does not have years; Stage 1 untreated to EOL was 7 months for one mother.

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Ashley2235, I believe that you made the right choice. I'm 73 a male in good health condition now 10 months after the Whipple. I also did chemo after surgery for 9 infusions and before, with 2 chemo drugs. So far no indications of any new symptoms, daily exercise of walking and light fitness equipment. After pathology report showed no living cancer cells the Oncologist said the statistical time-line suggest 72 months before reoccurrence. I hope she is right and that you've opted for the best choice. I applaud your spirit of fight and wish you all the best for many years of life. I have been doing meditation and think it helps with mindfulness and calm.

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@mayoconnectuser1

Many times refusal is related to insurance coverage.
1. start with insurance company and work backwards
2. Search for a physician who will support your decision for insurance to cover - be aggressive - search far and wide - tell them you will not take no for an answer

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I'm just gonna add: If there's an insurance company unwilling to pay for adjuvant (post-op) chemo, they'd better be willing to pay for monthly MRI and PET scans for at least a year, along with monthly Signatera tests and biweekly CA19-9 tests instead.

Although the idea of "Total Neoadjuvant Therapy" has some science to support it, I think more science will overturn that down the road. A lot of the "best science" during the first few weeks of the covid pandemic turned out to be a crock. Lobotomies and electroshock therapy were common treatments for mental health issues back in the dark ages as well.

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