Carcinoid Syndrome Support Group
Carcinoid syndrome refers to the array of symptoms that occur secondary to carcinoid tumors. Carcinoid tumors are discrete, yellow, well-circumscribed tumors that can occur anywhere along the gastrointestinal tract (GI). They most commonly affect the appendix, ileum, and rectum. These tumors are unique in that they are endocrine in nature.
I was just diagnosed with carcinoid tumid last week. I know that a petscan is good for finding cancerous regions throughout body but I read that a osteoscan was a must. Anyone have experience with these scans?
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Subsequent tests included a pet scan, mri., and octreotide scan. The fun one, an octreotide scan, occurred over two days I believe. The octreotide scan appears to be a definitive test. There is also the 5-HIAA.
The surgery was in June 2010. Everything up to the transverse colon was removed. I never thought I'd ever know that much about the inside.
In July 2010 I had a procedure for GERD which the surgeon told me was one of the most important things I could have done v. taking a daily dose of PPI.
My first oncologist I asked, for a CT scan of the chest. Doing some research I found the lungs were a possible spot for carcinoid.
There were nodes found on my lungs not related to carcinoid or any lung cancer. Since than I dropped that oncologist, becoming a more proactive patient and about 5 sandostatin injections later.
Present day, I am lucky to live near an oncologist that specializes in carcinoid in Los Angeles. I also found a local support group that helped me get through.
I am now down to an annual mir and ct scan.
The surgeon initially told me things would go back to normal after about 6 months. It took about 2 and half years and is fairly normal now. I do have watch what I eat or pay the price for indulgence.