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? I've also heard about people being candidates for an artificial pancreas. Wondering if this is 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.
Hi Liz251cbbbc and a very warm welcome to the Macmillan Community but sorry to hear about your ongoing challenges.
Navigating this journey can be such a stressful and challenging time but getting support from people who may have walked or are walking the ‘exact same' journey can help a lot.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated Pancreatic Cancer Support Group.
This group is a safe place to talk to others with a similar diagnosis and challenges, to ask questions and get support.
To connect in with the group please click on the link below…….
……. and once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial/work guidance or just a listening ear.
Do get back to me if you need further help navigating the community.
