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Pancreas removal

Posted by liz25 @liz25, Aug 4 4:42pm

I’m a 69-year-old woman and I’ve been living with chronic pancreatitis for around seven years. I suffer from regular, painful attacks which I currently manage with Oramorph when they become severe. Back in 2018 or 2019, I was told I had a small non-cancerous mass at the tail of my pancreas. Now, in 2025, I’ve been informed that the mass has grown and is classified as an IPMN (Intraductal Papillary Mucinous Neoplasm). Although it is still suspected to be non-cancerous, it has caused significant damage. What began in the tail has now spread, I now have three areas of damage, including a large mass in both the head and tail of the pancreas. The main pancreatic duct is also inflamed and damaged, and is now producing a mucus-like substance (I believe there is a name for this but I haven’t been able to recall it). The overall impact is that most of my pancreas has effectively been destroyed.

I’ve now been given two options. The first is to undergo a full pancreatectomy, which is a life-threatening operation with major risks and long-term consequences. It would leave me insulin-dependent for life, would likely require enzyme supplements and comes with the possibility of serious complications both during and after surgery. The second option is to continue as I am — to live with the condition, and have the hospital monitor the IPMN and overall pancreatic function. The hope would be to gain a few more good years before a more urgent intervention is needed.

The problem is, I’m already losing a significant amount of weight and have recently developed diabetes. My quality of life is noticeably declining, and I don’t feel confident that doing nothing will keep me well in the short or long term. At the same time, the thought of such a major operation at my age, with everything that comes after it, is daunting to say the least.

I’m posting this to ask if anyone else has faced this decision, or gone through this kind of operation. If you’ve had a full pancreatectomy, how have you found life afterward? How do you manage insulin and digestion day to day? And if you’ve chosen to monitor your IPMN instead of having surgery, how has that worked out for you so far? And any information on people being candidates for an artificial pancreas and how that works? if this is even another option?
Any insight, advice, or experience you can share would be really appreciated. I just want to make the most informed decision I can.

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

Profile picture for matt2024
matt2024 | @matt2024 | Aug 4 9:19pm

Hi @liz25, sorry to hear that you are going through this trouble. I completely understand your dilemma.

About 6 years ago, I was diagnosed with MEN1 after they incidentally found 5 NETs on my pancreas. I too was faced with a similar decision - wait for them to continue to grow (and perhaps metastasize) or undergo a total pancreatectomy. I chose the latter, in the hospital 6 days, and had to learn to adjust to the resultant diabetes and digestion challenges. What I can tell you is that I am doing well, my A1C is a little under 6.0 (technically qualifies for pre-diabetes) and I can eat most anything and just have to watch carbs and fats. I lead a pretty normal lifestyle and am very active outdoors. Having turned 60 this year (ugh!), I can say I feel better now that I did before since I eat better and keep active to manage blood sugar.

Some will say your life is over and I say, no, it is just different now. If you do decide for the surgery, I would get set with an insulin pump and CGM (continuous glucose monitor) combo to control your blood sugar. It's been a godsend for me instead of injections and I am way more in control of my levels. More than happy to help if you have any questions or need an ear.

FWIW, I have read that many docs now recommend TP for folks with chronic pancreatitis instead of living in agony for years.

Take care
- Matt

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ltg7622 | @ltg7622 | Aug 5 12:46pm

I am a 73 yo woman diagnosed with Main Duct IPMN which is dispersed throughput the pancreas which is dilated to 15mm. This is a high risk condition that is likely already cancerous. I was diagnosed Nov 2024 and have had an EUS and 3 MRCPs. The only treatment recommended for me is a Total Pancreatectomy including bile, spleen, duodenum and gall bladder removal. What’s different for me is that I am asymptomatic and feel fine. I have chosen to continue monitoring and will consider the TP at the time of progression if I still qualify for it. It’s a hard choice because they feel they can “cure” me at this point. But the risk of the surgery and life afterwards doesn’t feel viable for me emotionally. I hope this is helpful. Whatever you decide is the right choice for you.

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liz25 | @liz25 | Aug 8 2:01pm

Thank you so much for all of the responses. I really appreciate you giving up your time and support. There's a lot of information to mull over and some very useful points. Hearing from those who are in or have been in a similar position helps immensely. Thank you.
After 7 years since my first attack of pancreatitis, I have had numerous attacks since, last year, I had a total of 9! This has badly damaged the whole pancreas. I have only just been prescribed Creon as my body isn't producing enough enzymes, and my weight loss is now about 2 stone, down to 50 kg. Being a vegetarian, I have looked for vegetarian alternatives, but there aren't any suitable, so once I have more of an understanding of how to take Creon effectively, I will start it.
After speaking with the consultant, my IPMN is growing, now 32mm and there is no timeline when this will turn cancerous, but it will, I could continue the way I have been going with the attacks at home with the help of strong pain relief and MRIs and endoscopies. This all takes a toll on my body and mental state. This is an incredibly hard decision to make as I'm scared. My worry is the surgery itself for the total pancreas removal as I live in Devon, England, and Derriford Hospital only performs 5 or 6 of these operations per year. So, this is not a decision I can make lightly, I'm thinking of asking for a second opinion and looking for hospitals that specialise. If you could suggest any uk pancreas professionals you can personally rate, I'd appreciate that.
Any more advice or thoughts welcome.
I can see that surgery seems to be the best and really only option. I'm just so scared of undergoing a surgery that is very rarely done with little experience especially in my area. Therefore I would have to travel and be away from my family .

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2 replies
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matt2024 | @matt2024 | Aug 8 9:09pm
In reply to @liz25 "Thank you so much for all of the responses. I really appreciate you giving up your..." + (show)
Profile picture for liz25 @liz25

Thank you so much for all of the responses. I really appreciate you giving up your time and support. There's a lot of information to mull over and some very useful points. Hearing from those who are in or have been in a similar position helps immensely. Thank you.
After 7 years since my first attack of pancreatitis, I have had numerous attacks since, last year, I had a total of 9! This has badly damaged the whole pancreas. I have only just been prescribed Creon as my body isn't producing enough enzymes, and my weight loss is now about 2 stone, down to 50 kg. Being a vegetarian, I have looked for vegetarian alternatives, but there aren't any suitable, so once I have more of an understanding of how to take Creon effectively, I will start it.
After speaking with the consultant, my IPMN is growing, now 32mm and there is no timeline when this will turn cancerous, but it will, I could continue the way I have been going with the attacks at home with the help of strong pain relief and MRIs and endoscopies. This all takes a toll on my body and mental state. This is an incredibly hard decision to make as I'm scared. My worry is the surgery itself for the total pancreas removal as I live in Devon, England, and Derriford Hospital only performs 5 or 6 of these operations per year. So, this is not a decision I can make lightly, I'm thinking of asking for a second opinion and looking for hospitals that specialise. If you could suggest any uk pancreas professionals you can personally rate, I'd appreciate that.
Any more advice or thoughts welcome.
I can see that surgery seems to be the best and really only option. I'm just so scared of undergoing a surgery that is very rarely done with little experience especially in my area. Therefore I would have to travel and be away from my family .

Jump to this post

I completely understand your situation. I too ended up having surgery out of town as it was the best choice for me. It might be worth checking out the Pancreatic Cancer Action Network site for recommendations - https://pancan.org/

I am not sure if they cover the UK, but I contacted them early on in my journey and they gave me really useful information for what to expect, choosing a doctor, etc. and a list of high volume pancreatic treatment facilities that was very helpful. I ended up having my surgery at Cleveland Clinic and I do believe that they and Mayo have facilities in London if that is of
interest.

Please let me know if you need anything. We are here to help!

- Matt

REPLY
1 reply
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liz25 | @liz25 | Aug 14 3:45pm
In reply to @matt2024 "I completely understand your situation. I too ended up having surgery out of town as it..." + (show)
Profile picture for matt2024 @matt2024

I completely understand your situation. I too ended up having surgery out of town as it was the best choice for me. It might be worth checking out the Pancreatic Cancer Action Network site for recommendations - https://pancan.org/

I am not sure if they cover the UK, but I contacted them early on in my journey and they gave me really useful information for what to expect, choosing a doctor, etc. and a list of high volume pancreatic treatment facilities that was very helpful. I ended up having my surgery at Cleveland Clinic and I do believe that they and Mayo have facilities in London if that is of
interest.

Please let me know if you need anything. We are here to help!

- Matt

Jump to this post

Thank you for your reply Matt.

Im sorry you had to go through this but glad to hear you're doing ok. I'll look into contacting pancan.Org, just struggling to come to terms with it. I know the more information I can gather the better.

Many thanks,
Liz

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gamaryanne | @gamaryanne | Aug 15 5:28am

@liz25
Pls strongly consider surgery in a high volume hospital. Even if it is not in the UK.
There is a large facility in Lisbon where you might go for a second opinion. It’s on the river. Beautiful facility; I visited it! My surgeon, from the States, is teaching in Lebanon right
now. He is excellent if he is actually operating there. I know these are not easy decisions but you can have a less painful life. Just some options and yes, PanCAN.org is a wonderful place to start for help. Prayers for you to find the right direction. Be strong and courageous!

REPLY
Profile picture for hakanb
hakanb | @hakanb | Aug 15 1:14pm
In reply to @liz25 "Thank you so much for all of the responses. I really appreciate you giving up your..." + (show)
Profile picture for liz25 @liz25

Thank you so much for all of the responses. I really appreciate you giving up your time and support. There's a lot of information to mull over and some very useful points. Hearing from those who are in or have been in a similar position helps immensely. Thank you.
After 7 years since my first attack of pancreatitis, I have had numerous attacks since, last year, I had a total of 9! This has badly damaged the whole pancreas. I have only just been prescribed Creon as my body isn't producing enough enzymes, and my weight loss is now about 2 stone, down to 50 kg. Being a vegetarian, I have looked for vegetarian alternatives, but there aren't any suitable, so once I have more of an understanding of how to take Creon effectively, I will start it.
After speaking with the consultant, my IPMN is growing, now 32mm and there is no timeline when this will turn cancerous, but it will, I could continue the way I have been going with the attacks at home with the help of strong pain relief and MRIs and endoscopies. This all takes a toll on my body and mental state. This is an incredibly hard decision to make as I'm scared. My worry is the surgery itself for the total pancreas removal as I live in Devon, England, and Derriford Hospital only performs 5 or 6 of these operations per year. So, this is not a decision I can make lightly, I'm thinking of asking for a second opinion and looking for hospitals that specialise. If you could suggest any uk pancreas professionals you can personally rate, I'd appreciate that.
Any more advice or thoughts welcome.
I can see that surgery seems to be the best and really only option. I'm just so scared of undergoing a surgery that is very rarely done with little experience especially in my area. Therefore I would have to travel and be away from my family .

Jump to this post

Hello, I had surgery two weeks ago in Antalya, Turkey. Not the entire pancreas was removed, only the tumor.
I am fine now. My oncologist recommended that I have the surgery before I fall down. I wish you good health.

Translate deepl

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