Has anyone had a Carcinoid tumor???

[irish]

When I had my hysterectomy back in 1990 I ended up having a Carcinoid tumor on my appendix. This was called an incidental carcinoid as I was not having symptoms. I had to have the appendix removed and the doc told me the surgery was just in time as the tumor was just "starting to eat away at the serosa" which would make it spread.

I had a very, very good gyne at the time (we had just moved to MI and I was referred to him) and he pulled all my colon and checked it for tumors plus checked liver, spleen, gallbladder and anything else he could reach. Luckily I had nothing to be found.

This is a very weird tumor and at the time of mine it was not classified as a cancer. That has changed over the years. It used to be considered "malignant" because it would spread but wasn't called cancer. It can cause death. One of my high school classmates and nursing school classmates just died of colon cancer last summer.

I had talked to her and she had had the carcinoid diagnosis in her tumor along with another type of cancer. When we moved back to MN in 1990  one of my son's classmate"s Mom died very young due to carcinoid tumor in her lungs and all over belly. They did not know how to deal with it years ago and much improvement has come along.

I had to do 24 hour urine testing every 6 months for about 6 years or so. The carcinoid tumor secretes hormones/chemicals that are found other places in the body, ie., epinephrine, serotonin, and others. When these products hit the blood stream they cause some unusual symptoms. One of the symptoms is extreme flushing of the face and neck with profuse sweating. Also, shakiness can occur. Many other issues also that can cause heart symptoms, lung, abdominal, symptoms, etc.

If you want to read more go to http://www.carcinoid.com    I hope this is right. There is a lot of information there. It is scary as heck to read but there are things that can be done treatment wise now and they monitor it more closely and in different ways than they did years ago. It is a disease that demands medical professionals with a lot of expertise in that area.

The reason I am mentioning this is because most people with autoimmune and immune problems are in a higher risk category for cancer. Our bodies don't operate quite the way they should and our killer cells can get a little lazy.

We had to move to MI or else hubby would be out of a job. We moved. Because we moved I doctored and took care of myself. If we hadn't moved I would not have gone to the doc for my "menopausal" symptoms and I know that I would have died many years ago from that tumor. Shows you what "divine intervention" can do and also what happens when we do something we don't want to do. Sometimes things do happen for our own good. Irish

[sarahjane]

Hello Irish
I'm glad you've posted this as I did the 24hr urine test for carcinoid syndrome a few months ago. My rheumy got me to do it as I have the extreme flushing of my face neck and chest along with bowel symptoms. My test however came back as normal though I did note I didn't have an episode of flushing while taking it. I think my rheumy will be keeping an eye on it anyway! Yes it is scary to read up on but as it is such a slow growing cancer it often has a better prognosis. I'm glad your journey has had a good outcome and I will follow this thread with interest
Sarah x

[irish]

sarajane, I am glad that you had a doc who was aware of the significance of your symptoms. I had read about carcinoid when I was in nurses training. When I ended up having one I was so surprised and didn't really know which way the wind way blowing. So much info has come out since then.

These are relatively rare, but I think they are more common than one would think. When I was working we had a patient in the nursing home that the doctor suspiscioned had a carcinoid tumor. He would get so hyper and have such a red flushing. The doctor didn't do any tests as this man was suffering from dementia and other severe illness and it was have been inhumane to put him through any treatment.

I do want to mentioin that you can have a urine test or you can have a blood test. I had one blood tet over the years and I think it was very spendy. Also, do you have to make a list of the medications that you are on for the lab when you do the urine test??? This helps them sort out the possibility of a medication affecting the results of the test. Good luck and keep us updated on how you are doing. Irish