Islet Cell Carcinoma

Hello, I am new to this board (and communicating online). I was diagnosed with islet cell carcinoma, had surgery where nothing was done and sent for chemo/radiation, then told to just watch it as it is still unresectable. I am 36 and I need to try to figure out how to live with all the uncertainty. They say it is slow growing but, does that mean 5 or 20 years? Should I be doing something in the mean time?

Dawna, just wanted to let you know I'm also a person with Islet cell cancer and I have been going to M.D. Anderson in Houston,Texas I live about 4 hours from there and it was so good to know that there was a good Dr. close by for me to go see and he is giving me a shot a month of Sanostatin depotLA to slow the growth of the tumor down so I could lose 50 lbs. before surgery for they will do Whipple surgery but I was told that I could live a while longer because its a slow growing tumor so I hope they are right in that and I do hope you are o.k. and I don't understand why they did sugery and didn't do anything. that would be upsetting to me.
My surgery is to last about 12 hours and thats the reason they want me in top shape and I'm working on it because I had gained weight and felt so big and that was one of the things I noticed the most and it affects my insulin and it has been going up since.still working on my weight and i'll get it off soon.

I was diagnosed 3 years ago with nonfunctioning islet cell carcinoma of pancreas, which had spread to the liver. Had the body and tail of the pancreas removed and the spleen. It also spread to the ovaries, which were removed. The mets to the liver were stopped for 18 months after a chemoembolization to the liver using a radioisoptope from France. Liver tumors are now growing and have multiple tumors to the peritoneal wall. I am currently on a trial drug called CCI-779. I will have my first CT after using this drug, next week and will see if it is effective. My cancer is slow growing compared to the typical adenocarcinoma of the pacreas, but is fast compared to typical islet cell carcinomas. The only way to tell how fast, is by the rate of growth and spread indicated by regular CT's or whatever method of imaging you are using.
Gail1

After "waiting and watching" for 9 months,We found the cancer has spread to my blood system. I had fluid around my heart that had to be drained off and in that fluid they found cancer cells. My onc says nothing to do if the fluid doesn't come back. He has no plans of ever giving me chemo. I am so scared of where it will show up next, and how long I have left.
any one have any ideas?

My 33 year old husband passed away 8/9/2004 from Islet Cell Carcinoma. I'm not sure if I can answer you questions but, I am here if you need to talk. Feel free to e-mail me any time at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----

I am a physician (psychiatrist) with Islet cell cancer, non-functioning type. Unfortunately, my doctor colleagues conspired to leave a 1 inch lymph node in me when I had surgery (distal pancreas removal and spleen removal with 13 lymph nodes removed also) for this in November, so I am going to have another major surgery in a couple weeks. I am no expert on my disease, but in going through this, I have found out that it is so rare that almost no one is an expert, and it is doubly important to be your own advocate in your care. I have gone from my local hospital to a major university center and spent more time asking questions that I didn't ask the first time because I didn't want to look stupid. I am guessing that some of you aren't getting the answers you want or need because your doctors don't want to look stupid in front of you. My new oncologist was very up front about this, saying "you probably know more about your disease than I do."

I was diagnosed with islet cell somatostatinoma in 1998 when the tail of my pancreas was removed. They said I had probably had it for 10 or 15 years. It had appeared in one lymph node. In 2002, I was told it had spread to the liver and surgery would not help since there were multiple tumors in both lobes. Now, they tell me I have 2 to 3 years left.

However, I just went to a private laboratory in Houston where they are doing a treatment protocol involving a form of sandostatin and Indium-111. The tumors have receptors for the sandostatin, which carries 100 times the radiation normally given, right into the tumors, without affecting healthy tissue, I am told.

I do not yet know the outcome of this treatment. Also, since the drug is still considered "investigative", many insurance companies will not cover it, and it costs around $20,000.

The incidence of this caner is about 1 in 40 million, so not many doctors really know much about it and not a lot of time or money has been put into developing treatment for it.

I have been receiving Sandostation by IM injection since 2002, and have not had any discomfort whatsoever, so far.

If I can give you any more information, I would be happy to have you email me on this forum.

Marie

Husband was diagnosed with non-functioning islet cell pancreatic cancer 7 1/2 years ago. Lots of interventions over the years, but living FULL life. Would be glad to offer info, if someone needs it.Froedtert Hospital, outside of Milw., is HIGHLY recommended.

I'm so sorry you lost your husband. If its not too hard, can you tell me how his cancer progressed? How did they find it? how did they treat it? how long did he have it before he died?
Most of the people I hear from/about had surgery where the main tumor was removed, mine cannot be.
I hope these aren't too forward. hope to hear soon

I know I put myself out there. At the time, I felt that I was strong enough to talk about my own personal experiences with this horrible disease. I thought that I might use it as therapy and help others out as well. It's one thing to actually have the disease but, it is something totally different to stand by and helplessly watch your loved one deteriorate and pass away. I'm sorry that I did not reply to some of your messages. I read them often but, find that I can't reply. I hope you all understand. May you all feel peace and find comfort.