Pre-Pancreatic Cancer, what path to follow

I don't have specific advice but I heard about Kay Kays who is a 31 year+ PC survivor. She lives without a pancreas and seems to be doing fine. Of course, YMMV.

First, happy 65th birthday! Today happens to be my 76th birthday, so we have something in common.

I was diagnosed with pancreatic cancer in November 2018, almost eight years ago. My tumor was unresectable, so surgery was never an option for me. I entered a clinical trial, underwent 33 radiation treatments, and have been on maintenance chemotherapy for more than six years. Today, I am still active, enjoying life, and looking forward to the future.

I understand your concern about quality of life. After nearly eight years of living with pancreatic cancer, I can tell you that quality of life is extremely important to me as well.

I have two strong suggestions for you.

First, please find people who have actually undergone a total pancreatectomy and talk with them. Ask them what their daily lives are like. How difficult is managing blood sugar? What about pancreatic enzymes, eating, traveling, and maintaining an active lifestyle? There are people living good, productive lives without a pancreas, and I think hearing directly from them would be invaluable. Their experiences may help you understand what life after surgery could really look like.

Second, and perhaps most importantly, please get a second opinion at a major pancreatic center before making this decision.

I would particularly suggest contacting Dr. Douglas Evans at Froedtert Hospital and the Medical College of Wisconsin in Milwaukee. He is a highly experienced pancreatic surgeon who deals with complex pancreatic conditions.

I would want someone with his experience to review your scans, pathology, genetic findings, and history of IPMNs. The important question is whether removing your entire pancreas is necessary now or whether continued surveillance or another approach might be reasonable.

One thing I have learned during my nearly eight years with pancreatic cancer is that medical predictions are not always certainties. When I was first diagnosed, I certainly never imagined I would be celebrating my 76th birthday today.

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.

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.

@beatpcan what is YMMV?

@rashida

Your Mileage May Vary. i.e. your outcome or experiences might be different than others.

@beatpcan thank you I am hopeless with abbreviations, anagrams, etc.!

I did not have total pancreatectomy, just a standard Whipple in 2024. I think my lifestyle is healthier now than before my Whipple. I did have to make changes and adapt.

I strongly recommend you get a second and third opinion if necessary to help you make a decision. I had my Whipple at Froedtert & MCW in Wisconsin by Dr. Douglas Evans. Dr. Evans is the best-of-the-best and performs even the most difficult of pancreatic cancer surgeries. His surgical team and medical team at the Cancer Center will walk with you every step of the way.

Hi @jbar61 - I had a total pancreatectomy and splenectomy in 2019 as a result of neuroendocrine tumors from MEN1.

The two immediate impacts to the pancreatectomy are diabetes and enzyme insufficiency. I use an insulin pump and CGM for blood sugar control and take Creon to aid in digestion. Creon is expensive without insurance and dosages can vary based on weight and diet.

It took me a bit to get those dialed in and lead a fairly active life now. The biggest challenge for me is controlling low glucose as I am very active so I prepare as @rmlrml does. I do find that it gives me the opportunity to stop and smell the roses so to speak so not a bad thing. I would do it all over again if faced with the same situation.

Happy to help if you have any other questions. Take care.
- Matt

Thank you @mcharlesfrancis 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