After 5 x-rays, 3 CT scans, 1 petscan, 2 different CT liver biopsys, 1 broncoscopy with biopsys, 2 mole biopsys, & 1 colonoscopy the VA has determined I have a Carcinoid tumor on the liver(found at the last liver biopsy). Over the last 10 months, since the discovery of a thin mole melanoma, with no evidence of any penetration (very thin and a slow growing kind of cancer) first x ray and then a follow up CT scan showed multiple spots on my liver, 2 spots on my lung and enlarged lymph nodes. All biopsys have been returned negative except the last one on the liver which tested as a carcinoid tumor.
The last pathology report stated no trace of melanoma and they could not find any tumor in the intestinal tract.
I have experienced no symptoms of any kind. The VA tells me there is nothing that can be done to treat this. It does not respond well to chemo. I sent my medical records to another oncology hospital and met with them and was told essentially the same thing "It is a slow growing cancer and there is nothing at this time they can do, eventually if the tumors affect one of the organs it will kill me, or depending where it is located they may be able to do surgery & buy a little more time. Go home and wait.
I have contacted Cancer Treatment Centers of America and considering using them. My insurance was approved and they want to schedule an appointment. After reading some of the blogs on this site about CTCA, I am beginning to wonder if this would be a good choice.
I have researched many treatments for carcinoid tumors such as PRRT, SIR-Spheres, Chemoembolization, Pentetreotide (Indium III) and various treatments with Octreotide that neither the VA or the other Oncologist I saw, even mentioned.
I did not intend to write a book, but does anyone here have any experience with carcinoid treatments and have any recommendations?