Non Functioning Islet Cell

I was diagnosed with non-functioning islet cell cancer in August of 06.  I immediately had surgury to remove the tumor in the tail of the pancreas, the spleen and two tumors in the liver.  Six months later I was put on chemo for numerous mets in the liver.  I went into remission for 3 months and am currently back on chemo for liver mets.

I am confused about the prognosis of this disease.  My doc said the tumors are slow growing and and you can live for many years.  Research I have read on the internet says chemo helps prolong life by months not years.  I was told this is a not curable but a treatable disease.  I recently read that in treatable cancers most patients die from other causes rather than the cancer.  The article did not mention specific types of cancer.  My question is "Is islet cell the type that you die from other causes or from the cancer itself?  What about liver failure?"

MW

First, let me say that cancer is a lot like high school cliques. Meaning all the popular cancers get the attention when it comes to high dollar research and attention. Meanwhile, the obscure cancers (like islet cell) are as popular to cancer research scientist as the nerdy, stinky high school kid is to the prom queen. If you don’t believe me, Google Islet Cell Carcinoma.

Okay, I sound a little cynical.   Now before anybody on here flames me, I feel your pain.   I'm 33 and had major surgery to remove all my pancreas, gallbladder, spleen, & duodenum last October due to a large cancerous islet cell tumor in my pancreas.  I was told that the doctors got it all, and I would never have to worry about islet cell cancer ever again.

Oooops, two weeks ago I was told it had returned where my pancreas used to be and had metastasized to my liver. (Metastasized is a fancy medical term for moved south for the winter. Only this carcinogenic geriatric snow bird owns an RV and plans on further traveling through-out my entire my body unless I can I can make him settle down & retire. Too bad I can’t build a Cracker Barrel where my spleen used be, because that would surely stop the tumors. Just like a geezer driving down the high-way, this cancer travels on the interstate in the left passing lane at 35 mph with his right turn signal flashing, so any additional growth should be slow growing.) 

Again, the key words are "slow-growing" which I have discovered don't mean a thing.  I’ve come to the conclusion that oncologists are a lot like an arrogant meteorologist with lackluster forecasting skills. For example, they both throw out percentages that make absolutely no sense to the common man or woman they are talking to.  I asked my doctors to define slow growing, and I didn't get a good answer, especially when I went from nothing in November to a tumor bonanza.  

I've been told my cancer is not curable at the present time. (I guess doctors throw in the "at the present time" to make you feel good.)  Instead of worrying about the end,  enjoy life.  Make the most of it.  With lack of previous research (but research is improving) and lots of varibables it is my understanding that Islet Cell Cancer can result in death in a few years to several decades after diagnosis. 

I know it can really suck at times with the complications, side effects of treatment, or crazy things we experience.  If you are concerned with what your future may hold, find a support group or someone who can help you emotionally.

Wow You are very uplifting I am a survivor of Islet cell cancer and have been living with it for 14 years. I am being treated at Mass Gen and if you need any more info about my doctor I would be glad to help you. I have lived a relatively normal life. I work full time most of the time and have been on chemo 3 times.  My cancer was discovered in my pancreas the size of a dime and it had mets to the liver at that time. I have had a good life saw two of my daughter get married and had their first children. Which makes me a grandmother. I am 55 and was dx when I was 41, it isn't all bad news. It is a slow growing cancer and your chances are very good that you will live as long as me if you keep a positive attitude. It is very important. Take Care

 

On 3/26/2008 tanzen35 wrote:

Wow You are very uplifting I am a survivor of Islet cell cancer and have been living with it for 14 years. I am being treated at Mass Gen and if you need any more info about my doctor I would be glad to help you. I have lived a relatively normal life. I work full time most of the time and have been on chemo 3 times.  My cancer was discovered in my pancreas the size of a dime and it had mets to the liver at that time. I have had a good life saw two of my daughter get married and had their first children. Which makes me a grandmother. I am 55 and was dx when I was 41, it isn't all bad news. It is a slow growing cancer and your chances are very good that you will live as long as me if you keep a positive attitude. It is very important. Take Care

I have been living with Islet cell cancer for 6 years now and am also working full time.  My tumor has mets into the Liver as well.  The sandostatin treatments of 50mg was keeping it a bay for the first 4 years and now all of a sudden, it is growing.  So my doctor is looking for other alternatives for me.  I have a teen age daughter and that keeps me going, knowing that I have to be there for her during these crucial years.  The hard part is thinking about her, if something happens to me.  But you are right, you must keep a positive attitude, sometimes it's hard to do.  But you know, I almost think that either extreme stress and anxiety maybe triggering the growth.  When I have these stressful events in my life, I feel pain in my liver area.  But anyway hop things are going well for you and keep in touch.  I will place a message out on the board when my doctor sets me up with my new treatment that he wants to try next.  Thank you for all of your words of encouragement from your message.