Vipoma Diagnosis

I am numb. I guess that is probably the best way to describe my feelings right now towards my recent medical diagnosis. After months of diarrhea, weakness, weight loss, back and stomach pain, etc. I have finally been given a definite diagnosis for what is wrong with me. I have been diagnosed as having Vipoma. Never heard of it? Join the many doctors and other medical professionals who have been in practice for decades who also have never heard of it. This disease is very rare and affects 1 in 10 million people. Yes, you heard right…one in ten million people. My Endocrinologist, who happens to be one of the top fifty in his field here has only encountered this a few times in his entire thirty plus years of practice. One of his nurses told me that she has been working in his office for nine years and that this is the very first time that office has encountered anyone with this disease. There is no mistake, they have run test after test after test and even repeated some of the tests just to be sure…it is definitely Vipoma.

From what I understand, this is a very rare cancer that usually originates in the pancreatic area. Chances of survival are greatly increased if they can find the tumors and remove them. The problem is, although they know for sure they are in my body, they do not know exactly where they are. Scat scans, radiation scanning, etc. have not been able to show where they are, but what it did show was another problem that I apparently have….Gallstones..one of which has calcified. I don’t really know what a calcified Gallstone is, but I do know that the doctors are wanting to remove those gallstones as well, but their priority right now is to find the Vipoma tumors and remove them. At this point I am told the next step is surgery, however the surgeons are in discussions as to how to proceed with that. Did I mention how rare this is? I am told to be patient and that they are aware of the urgency of the situation but that is very hard to do when I do not know what to expect next. Doing nothing is not an option as of course if you do not remove these tumors it is fatal. However, for what I have read, even if you do remove the tumors, there are no guarantees. I read somewhere that your chances are greatly improved if they can remove it, but that by the time symptoms present themselves it has normally already spread making your chances not so good. The survival rate for this does not seem to be really good, but I have a LOT of people praying for me so I am hopeful.

I just wish I could speak with someone who has this and is living with it. Someone who can tell me that there is a LOT of hope and that though most people do not make it, there are a LOT of people who do. But I cannot find anything like that out there on the internet, not in the forums, anywhere. So I wait, and pray, and enjoy as much time with my kids as possible. I am scared if you can’t tell by this posting…I am very scared. I have hid this diagnosis from my three youngest children (ages 4, 8, and 10) because I do not want to scare them. It just doesn’t seem fair to put something like this on them when they are working so hard in school. I don’t want them worried and I don’t want them to cry. If there is anybody out there who has this, or know of someone who has or had this, please let me know. I could really use to hear from someone out there who knows something about this. Thanks for listening.