Welcome to Cancer Chat claires1990.

I'm sorry to hear that a large tumour took over your pancreas and that the surgeons had to remove your gall bladder, part of your duodenum, stomach and bile duct.

We haven't had many posts about this on the forum but I thought I would put you in touch with [@Geoff999]‍ as his wife was being advised to have this operation. It's been a little while since he's been on the forum but hopefully he'll pop by to share his wife's experience with you now I've mentioned him in this post.

It may be worth joining the online forum on the pancreatic cancer uk website as you may find it easier to connect with others there who have had a similar experience to yourself.

Kind regards, 

Steph, Cancer Chat Moderator

Hi Claire 

If you join community.macmillan.org.uk/.../ 

You will find others who are able to relate more closely to your situation. My wife Anne has pancreatic cancer but has refused any treatment because at 71yrs she is not willing to go through the over all trauma of an operation plus a loss of  quality of life just in order to maybe have an additional 3 and a half years of life. A year ago she was given 6 to 12months to live  but to the present time is finding creon is keeping her weight up whilst still feeling fine apart from a lot of wind and bloating. I hope this helps. Stay safe and positive. 

Geoff999

Hi Claire. 

I found your post while looking for information for my cousin in New Zealand.

She is in her late 40's and had her pancreas removed 2 weeks ago for IPMN. She had 6 months of abdominal pain (prior to her IPMN diagnosis) which her GP diagnosed as IBS. No other past medical history.  Just heard  she got her biopsy results today and she's had a lucky save as her survival chances would have been less than a year had she not had surgery. 

She's in the early days learning about insulin and enzymes but looking forward to recovery. 

I hope you are well and have adjusted to life. Would be great to hear how you are getting on. 

Hiya,

Thanks for getting in touch! I'm very sorry to hear about your cousin, but the prognosis sounds good! It's strange to think an experience like that could make you feel lucky, but it's true.

I was lucky too and made a pretty good recovery from the surgery. I had some trouble with bowel obstructions post-surgery (very painful) so that's a useful thing to look out for! Ensure she isn't eating too much fatty foods post-surgery (which my dietician recommended for me as I'd lost quite a bit of weight and it was not a good idea!) 

It's a lot to get your head around - the insulin and enzymes - especially if she was relatively healthy before, but you really do get used to it. A challenge can be finding people with similar experiences - there are lots of diabetics (who don't take enzymes), or people with partial pancreatectomies/whipples who don't require insulin - but it's difficult to find people with both! There are some Facebook groups that can be useful at time. 

As for now - I take omeprazole, vitiamins and iron tablets each day and started on an insulin pump recently which has been great! I do struggle with fatigue at times but returned to work 6 months post-surgery and have been working pretty much ever since. 

I'm happy to answer any questions you or she may have - just drop a note here!

Claire

Hi Claire

I've just had a total pancreatectomy plus my gallbladder and spleen removed. It was all a huge shock as I hadn't had any previous symptoms either. 
I'm 4 weeks post-op and slowly getting used to the creon and insulin. I will be starting chemo in about 4 weeks.

it would be great to hear more from you on how you are coping and what it's like a few years down the line. 
 

debbie 

Hi Claire ,

was researching total pancreatomy and was glad to come  across your post . 
I am due surgery for a TP In January 2022. I am 45 and I am very scared . Any  advice or support groups you can provide will be much appreciated . 
what is life like after ?

how long did you take to recover ?

would love for you to give me some advice .

thank you 

Hi, 

Sorry to hear about your upcoming surgery, but in a way its great they are able to operate.

My life is relatively back to normal - I was back at work 6months after surgery and have worked full time since then. I suffer from difficult fatigue but able to get by. My diet is also largely the same, avoiding high fat foods when I can - and managing the Creon (enzymes) and diabetes.

In your immediate recovery ensure you're prescribed Creon for digestion and to keep an eye to avoid bowel obstructions (keeping a low fat diet immediately after surgery will help this).

As for support groups - depending on your type of cancer, Pancreatic Cancer UK were incredibly valuable to me and my family after the surgery, they have a helpline with a nurse and various support groups. I also have found some useful Facebook groups, including www.facebook.com/.../TotalPancreatectomy which although includes people who have had auto islet transplants and had the surgery for chronic pancreatitis (I didn't) has lots of useful info. Another useful Facebook group is www.facebook.com/.../2278223795752890 

If you've any other questions, I'm happy to share my experience!

how have u been since ur total pancreatectomy can u live life as normal now and do normal things