5 years plus survivors

[Support Team]

Peter who is just over 5 years past his Whipple's surgery would like to share experiences with other long term survivors. He is not diabetic and is generally well. He doesn't currently have internet access but if you post here or email Pancreatic Cancer UK we can put you in touch

[Jan]

Dear Peter

Yes long term survivorship is of interest to me also as my operation was in 1998. Amazingly from our group there is 3 of us who were operated on in that year. More amazing is that none of are on emzymes nor are we diabetic. One of us, Chris had pancreatitis not cancer. Myself and Bill did not have chemo or radio therapy for our cancers, yet both were differing types of cancer. Another in our group Colin, was operated on for pancreatits about 4 years while he is not a diabetic, but is often experiencing pain and is looking for solutions.

Family history of pancratic conditions vary between us all and I would like to know more in this area also but I am not sure of where easy to find data would be available.

I imagine people who have had a whipples for pancreatitis in the past would be able to give us more of an idea of what the future holds. I can only hope some study has been done of their outcomes. Hopefully too we shall get some more replies.

Regards

[Support Team]

I have been contacted today by a 13 year survivor in the UK. he doesn't know what type of pancreatic cancer he had.

[Jan]

wohoo!! I hope to hear more from people like him! Like what age was he when operated on? Since my last posting Chris ( he was operated on for pancreatitis but interestly his mother died of pc) has become a diabetic. This is thought to have been triggered by a bout of food poisioning. He has had some time off work but has learnt to manage his levels ok. Colin has been basically re-whippled inorder to repositon bits. His pain levels have decreased and he has attended a pain management workshop to help him also. He is now off the heavy duty painkillers which he has been on for the last 4 years and had has been told by his doctor he can start work again. Keep up the good work PC-UK

Jan

[LittleMissOptimistic]

Hi all,

this is a great forum but I would really like to see more posts here! If anyone has more years of experiance to offer it would mean MORE than you can imagine to us who are fighting this daily.

My Best.

[Robynrose]

Aren't we the lucky ones?? I am a twelve plus years survivor. I was 53 when I had my operation in 1997. Once I came to grips with what I could eat and what I couldn't life became tollerible. The four years leading up to that weren't. For me wheat and dairy are a no no, as are fat/oils, and I eat smaller meals. Really miss toast and marmalade and creamed rice pudding. I am not a diabetic and don't take enzymes. I do find on the odd occasion if I haven't eaten my blood sugar will drop rapidly. I don't know what type of tumor I had other than it was rare and was sent to the States for analysis. Over the past six years my bowel has become quite lazy, probably due to the lack of whole grains, and I am now waiting for further surgery. My heartfelt thoughts go to those who are facing a whipples operation and I send you positive vibes.

Robyn in New Zealand