Im told I need a total pancreatectomy aged 70yrs

[Geoff999]

Dear all I'm asking for information and life experiences from anyone 70yrs or older who have had, or know someone who has had, a total pancreatectomy. I'm told by my Consultant surgeon I should have my complete pancreas removed but I just don't know what to do. I'm 70yrs and already take meds for Lupus, an immune system disorder. I remember 16yrs ago being treated for Non Hodkins Lymphoma - which was successful - but suffered badly from chemo as Lupus completely knocked out my immune system and I remember saying at the time I just wanted to die it was so bad. Now, with all those memories flooding back, I have to make the decision on whether to go through all that again following major keyhole surgery for a pancreatectomy. I'm still so confused and frightened despite speaking to a specialist nurse on the subject.

[Geoff999]

I forgot to say I'm female. I got my husband to join the site for me and he used his user name by mistake! Geoff999

[Veema]

I can't think of anyone who currently uses the forum who has had that surgery. My husband had the whipples surgery, which was not keyhole and is a major surgery.

Unfortunately, no-one can make that decision for you...I know how debilitating lupus can be, so having surgery and possible chemotherapy on top of that is bound to be hard going. But if you have pancreatic cancer, the only possible cure is surgery and even that isn't guaranteed. The side effects of having no pancreas would be you would become diabetic and need to take creon (digestive enzymes)...I also thought that if they took the whole pancreas (or even just the tail end) then they took the spleen as well, which again is vital for the immune system. It's a tough decision. I suppose you need to take into consideration the stage of the disease and how active it is.

The specialist nurses on here are great...maybe give them a ring.

Vx

[Marmalade]

I am not sure the surgeon is the right person to have this conversation with. A surgeon speaks about what he or she as a surgeon can do. It is physically possible for him to remove the pancreas but what you want to know is, what does the recovery entail, what quality of life might you expect given your other issues and any post operative chemo and what the prognosis is. This conversation might be better had with your GI consultant and or your GP both of whom have to care for you during and after any surgery. Ultimately the GP is the person responsible for your care and welfare, they refer you for specialist advice but they are responsible and of course if you are considering the no treatment option you will want to know how the GP and palliative care team will keep you comfortable and what quality of life you might expect and how much time (this is hard as everyone is different but you should be told the possible parameters. Only then can you make your decision. I hope this helps and it assumes you have a PC diagnosis. My husband decided against chemo or other interventions and my thread is called "our journey without Chemo" in the friends and carers section. Please remember that as our medical history varies no two experiences are the same.

Good luck,

Marmalade

[Geoff999]

Thank you everyone for your views and comments

[Geoff999]

Forgot. My heads all over the place. My intended user name should have been Annabell. How can I change my current incorrect username please?

[Veema]

I think you'll need to contact the forum support team to change your username...but it doesn't really matter what it is, we now know you're Annabell, so don't worry, we won't call you Geoff!

Vx