This always concerned me!! The statistic my doctor gave me was that we had a 50% risk of developing pancreatic cancer within 5-10 years after the first attack. There are a lot of other statistics out there on the net. But when I asked him (and other doctors) what we could do about that, they kind of shrugged and said nothing. Nothing? I'm sorry I'm not going to do nothing about getting cancer.

When I met with Dr. Freeman at the U of M I asked him about the risk of diabetes and he shrugged and said that it is outweighed by the risk of cancer which is nearly 50%. So, I asked him what we could do about that, and he said that the Total Pancreatectomy was the only way to reduce the risk (and eliminates it) .

This was a major deciding factor in having the surgery for me. I would guess other than that the best thing you can do is make sure you have a good GI and go in for regular MRCPs and EUSs?

It has also been a big concern for me. I did same and asked Dr. Patel in San Antonio and I was given the same answer as Taparapa. Suggestion is TP/AIT, the sooner the better so that I may have a richer harvest of islet cells to transplant. The are working on scheduling me to see Dr. Levy in Dallas.

Two great responses! Though any consideration of such drastic measures scares the crap out of me as I'm sure it does every one else. I too have the same concerns about the absurdity of only masking the pain and not being proactive with prevention. As well, I have had several doctors look at me cross-eyed and tell me to take a pill. Fortunately, I am encouraged with the latest group I am seeing that they will be more proactive. The latest two, a heptobiliary surgeon and gi focused on managing liver transplant patients both recommend no surgical intervention for me at this time though the surgeon was considering me for the whipple when I first saw him. I think we have to rely on the medical basis that the benefits must FAR outweight the risks but when cp becomes so debilitating and painful, removal seems the only option and though I previously thought partial removal would be the way to start such a plan, hearing stories here cause me to consider complete removal. Guess I'll probably have to deal with that question some time in the future. I think Taparapa hit the nail on the head with her last sentence. My only addition would be insuring you have confidence in the doctors you are seeing. Good luck. Blessings to you!

This scares me too. I don't officially have CP yet, though only a matter of time before I'm diagnosed. If that is true that there is a 50% risk of getting pancreatic cancer then I'd rather take the drastic option.

I am also worried as my last few ct scans shown I have a dilated common bile duct and dilated pancreatic duct, when I looked this up to see if any significance etc I can see a lot of stuff about double duct warning which basically says if you have both of these there's a v high risk of pancreatic cancer. I don't know, my specialist doesn't seem concerned atall. Worrying times

Wow. I've never heard 50%. The Cleveland Clinic says 4% higher chance in the section under "Complications"

http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/gastroenterology/chronic-pancreatitis/

That's a huge difference in numbers. I have an appointment with Dr. Stevens on 9/6. I'm definitely asking him this question.

I, too, worry about it but the drs I've seen don't seem to care about it. Are there things we can do to prevent it? I would love it if they would remove my pancreas.

I don't remember ever reading the 50% number either. I think I saw that if it was hereditary it could be that high but not for other types of chronic pancreatitis. I think I'd like to keep my messed up pancreas as long as I can. Having it removed can cause problems too. The kind of diabetes it can cause is serious in itself. If it ever got that bad I would consider it but until then I think it's here to stay.

Having had type 1 diabetes ( brittle ) for going on 15 years and CP going on about 6 years with hospitalisation at least once every 6 weeks, I can't help but seriously look at having a complete pancreatectomy. With the constant pain and irratic sugar levels all I would like is the best quality of life possable. Have any of you had the pancrease removed and if so what was the outcome. Even if the risk of pancreatic cancer is only 5% why take it. I am at this point seriosly considering finding a surgeon who is willing to do the op. Being in South Africa and relying on state health this will not be easy, so wish me luck.

Thanks for all the replies and insights. A lot to think about.

I am stuck in an area with no doctors that really deal with pancreatitis. My GI is great but very limited as is any testing around here. I have no idea what kind of damage is done to my pancreas. No one who really knows what to look for or how to tests.

I do know that I cannot eat without creon. And even taking the supplemental enzymes I have pretty bad pain. I am luckier than most of you. I have only been hospitalized twice in the last year. But even then, it is a joke, as they really don't know what to do with me.

All I want is pain meds, a NOP diet and fluids. Nothing else they can do really, but last time, they still kept bringing me food, which I refused. They simply did not get it.

I need to find me a good pancreatic doctor.

I also cannot eat without the creon, I was in the hospital for 5 months, that was no fun, have had numerous ercps and mri's that I have lost count, pik line, tubes,surgery because when a general surgeon tried to drain my pseudo cyst it burst and I had to be opened in order to be cleaned that took quite awhile to heal, I had to have a machine attached to me to help with that. I have thought about just staying like this and suffer pain forever, as long as I can that is, rather than have a major surgery again. But I feel that it has started to make me miserable, besides I understand that the more I prolong a complete transplant the less chance I would have of rescuing a good harvest of islet cells. If I have a partial then and later still need the rest of my pancreas removed I might just not have enough good cells to transplant and I would need a cadaver's pancreas and what if my body rejects it, when I feel that at this point I could use my own cells in the liver and a chance for a somewhat back to normal life. I understand that there is a chance of diabetes but that will be the chances I am taking with which ever my choice of surgery will be. But with all the damage, mush and pain I might as well go for it all and hope that God gives me another chance. Sorry if i am venting now, this is scary, decisions are scary, honestly one day I am ready for the surgery and the next day I am so frightened that I just start to cry. But I want to be better for my family.

If I were that bad I would seriously consider it. Right now I have flair ups of pain and nausea that usually only last around a week. I have diarrhea every day though.

I've ready about people who have gone through the surgery where they remove your pancreas and transplant your islet cells to your liver and they don't have diabetes. I've read that even if you do get diabetes with this procedure, often times it's not the brittle diabetes. I think you need to make the best decision you can for yourself and go for it. I hope this works for you and you have a great outcome. I can imagine how difficult of a decision it is to make.

Tara...where are you located? There are two great doctors who deal with pancreas issues. One is Dr. Freeman in MN and the other is Dr. Leham in Indianapolis. I saw Dr. Freeman and he is really great. At the time he suggested I get my gallbladder removed to see if that helped. I did this and it didn't help. I've been thinking about going back to see him but I don't have the time or the money to do it right now.

I live in WV.

Indianapolis is 8 hrs away. But Lexington KY is 2 1/2 hours away and there is a pancreatic specialist there at the University of Kentucky.