Insulinoma Support Network

Our stories

Our stories

Read the experiences of people living with insulinomas. We are always welcoming new stories, contact us to share yours.


Kim's Story


Kim, from Canada, was treated for a benign insulinoma in 2006.

I would have to say the first time that I can remember about my symptoms was when my son was two years old, it was Christmas day 1997 and he was playing around the Xmas tree and it toppled over on him. I got up to help but all I could do was just stare! I knew what was happening but was unable to do anything about it. I was so disoriented.  My wife was angry at me for not helping.

That was the beginning!

Over the years it would happen again and again. I would start to sweat, my lips would tingle, hands started to shake. And then I would feel like I was in a dream. Everyone would say “eat something, you'll feel better.  So I ate, and I did feel better.

Yea I was gaining weight-- I used to be very outgoing, always working on something, going somewhere, but now it was getting harder.  Decided to start jogging, made it to the end of the road and had to come back and chug down two cokes. Thought it was me- Thought I was just lazy!

A few more years went by…

Being a man, a stubborn one at that, I kept telling myself everything was ok. Sometimes my wife would be talking to me and I could see her lips move but I was somewhere else. The family and I went on vacation and after a day of walking around we decided to stop for lunch at a fast food restaurant. At the counter, my wife asked me what I wanted, I could see the menu on the wall, but I could not read it. I did not know where I was .It was all so confusing. I sat down and they ordered for me. It was time to see a doctor.

My family doctor was on vacation for the summer so I saw his replacement. I went for a fasting Glucose test and it came back 1.2 mmol/l   He said I was hypoglycemic and should take glucose tablets if I was feeling bad. He did not seem too concerned?  He also said he would also contact a specialist just to be sure and will call me if anything should come up. A couple of months went by and my wife said I should call to make sure everything was ok. Oops - he forgot to call. Another month went by and I finally was able to see an Internists. Another month went by and I had an ultrasound done. The head physician was called in by the technician to see and he said I think we should send you for a CT scan. I got that appointment in nine days. It was getting kinda scary now.

My internists (a wonderful women - love her) told me I had an insulinoma tumor. -- (never heard that word before) and she explained it all. Of course my first thought was the “C” word, she said If I've had these symptoms for nine years now she didn't think so but of course you never know until surgery and biopsy.

My surgeon ( a wonderful women--love her too) explained to me that they could not pinpoint exactly where the tumor was in my pancreas so they could not do laparoscopic surgery, they had to open me right up. She also told me that because of the same they did not know if they would do a distal pancreatectomy or the Whipple procedure (look that one up) 

I had surgery on 2nd Febuary 2006. I woke up after surgery feeling cold and nauseous (threw up a couple of times, once on the nurse, sorry dear) Recovery was slow the first day so they kept me in post op for quite a while. The nurses tried to get me up after the second day but I was in so much pain I just couldn't and they did not understand this, they said I should have almost no pain. They gave me more pills which didn't work then after one more day they decided to take out my epidural and reposition it. That worked and after fifteen minutes I was up and walking about. After ten days, I was feeling good and wanted to go home so they discharged me. I was quite grateful that I only had the distal pancreatectomy and not the Whipple. Six weeks later I went back to work feeling great!

I went for a follow-up to my surgeon's office and she said that my biopsy had revealed not one tumor but three, there was no cancer. With three tumors though, their might be a chance of more in the front part of my pancreas, But time will tell I guess. I am type 2 diabetic now but am managing it well with insulin and pills. I go to the diabetic clinic at the hospital every three months

Life is good and  now do everything I did ten years ago without all the fuzzys as my wife calls them. My only regret is that I did not get myself checked sooner as I could have avoided all that was happening during that time. It was a wild ride but one I care not to take again.

Elliot wright