I have just finished having CT Scans and octreoscans to form a baseline for the carcinoid tumor since surgery. The verdict was delivered by telephone yesterday. ”No surprises”. There are two “spots” on my liver which are visible on the CT Scan and they light up the octreoscan which generally means they are carcinoid. They were visible on CT Scan before the surgery. The doctor advises watch and wait.
Because carcinoid tumors grow slowly and because doctors don’t really recognize the difference between carcinoid tumor and other more common cancers or the doctors believe that expert recommended treatment is too “aggressive”, many times oncologists will recommend “watch and wait” when carcinoid tumors are diagnosed. The CT Scans are normally repeated every 3 or 4 months. Octreoscans are repeated annually. Any visible changes or changes in symptoms should trigger discussions for treatment.
We have already mentioned that experts in treating carcinoid recommend surgery (Carcinoid Tumor Surgery in my future?). Oncologists are trained to believe that surgery should be the last option for cancer. Carcinoid experts believe that surgery is the first/best option for carcinoid tumor. After all, even though tumor growth is slow, it’s growth and metastasis can cause death just like a normal cancer. PLus carcinoid tumor generate a mix of endocrine fluids that over time can destroy the intestines, heart valves, liver and other organs. Tumor removal (both primary and metastases) statistically seems to both lengthen the expected life of the patient and lengthen the time to progression of the disease and the amount of time lengthened is measured in years! Even when not all tumor can be removed (the surgery is then called debulking) or found, these statistics seem to hold. Some patients are inoperable but there are other treatments available. (Some are told they are inoperable, then they go to a clinic specializing in carcinoid and get surgery!)
Therefore, I have coined a new term for “watch and wait”. We should call it “Ambulatory Hospice”. In view of the experts opinions above it seems to me that we are watching the disease slowly kill the patient and merely treating the symptoms to keep the patient as comfortable as possible.
In my case, I will discuss and review the scans in person with my oncologist the second week of November. Since I had major surgery this year and my doctor is not “aggressive” on treatment, no major treatments will be undertaken for a while, at least until there is some progression.