Pre-Pancreatic Cancer, what path to follow

Posted by jbar61 @jbar61, 4 days ago

Today I am 65 years old and possess a dozen Pancreatic neoplasms with 1 or more being an IPMN with CEA at 3,193 and two gene mutations, GNAS and KRAS.
History, short version - More than two decades ago the first neoplasm was found while tracking adenomas on my adrenal glands, which stopped growing a decade ago. When the biggest pancreatic in the tail reached 3cm it was needle biopsied during EUS and the CEA was 44,172, more than 100 x the concern limit. A spleen-preserving distal pancreatectomy later, it (MCN) was gone and I went on daily meds to keep my blood sugar in a decent place. At that point in time there were three smaller 1½cm ones in the body and two ½cm ones in the head. The growth rates of the others and newer ones seem to be the same as the growth rate of the first and subsequent ones. The prediction three years ago was a pancreatic body removal, with a couple of tumors, next year and then consider the head a few years after that.
The reality, today, is they are talking complete pancreas removal in the near term. So,,, I'm actually looking at this as a decision-point. I AM ALL ABOUT QUALITY LIFE, NOT FOCUSED ON QUANTITY. The way I see it I can have a total pancreatectomy and live a while with the consequences of that or look at the last 6 years as living on borrowed time, live great quality for the next 3 years, and let god take me this time. It's a heck of a decision, especially without much information.
I am not looking for votes, just specific information. My gastroenterologist who knows me tells me that life after a total pancreatectomy is not a quality life compared to the one I've lived. My endocrinologist tells me that he has several patients that are living good lives without a pancreas. I asked him to please see if he could find me a few to converse with and hear how it really is. It's been two months and he has not.
What I am specifically looking for is the following -
1. What is life like after a total pancreatectomy?
2. What is dying like from pancreatic cancer?
3. No votes.

Decisions, decisions.

Thank you in advance.

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

Profile picture for mcharlesfrancis @mcharlesfrancis

The Seena Magowitz Foundation can help arrange this second opinion for you. Please contact them directly. You do not have to travel to Wisconsin. Once they have obtained your medical records and scans, the second opinion can be conducted through a Zoom consultation.

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Thanks again @mcharlesfrancis.

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Profile picture for rmlrml @rmlrml

Re: Life after total pancreatectomy. I was 64 when the remainder of my pancreas was removed. I am now 78, and as long as I keep up with my medicines, watch my diet, see my doctor regularly, I am expecting to live many more years. I did manage to work until I could retire at 65, but I am sure I could not have managed to keep a regular 8-hour day job. However, I had no problem keeping a flower and veg garden and do work and hobbies around the house. I usually feel well, most people don't know about my health issues, just my close friends. One big change was suddenly becoming a type 1 diabetic. The other was digestion problems. These things take time to get under control. I would say you must be willing to be extremely organized and forward thinking regarding activities. I never go out unless my pump battery is charged, my phone is charged, I have plenty of insulin, carry containers of meds I need if I am eating out, extra juice and candies, and medical alert information. I would never go on a long hike or take a trip. requiring plane changes unless someone was with me. Every morning I send my friend an emoji so she knows I made it through the night.
So, I hope you are lucky like me, and you can continue to have a quality life. You may have to figure out which activities are reasonable.

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Thank you @rmlrml for this information. I'm still compiling information. My endocrinologist it definitely a longer life vote. He is the one looking for someone for me to speak with. He has not come forward with someone for me that supports his vote, yet. I am a year-ish away from having to decide. Thanks again,
John

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