In hindsight, the carcinoid was a better diagnosis than most cancers because 2 years later, with 5 CT scans, a 68-GA PET, and 19 Sandostatin LAR shots, I have had no progression or changes in my tumors. If it had been some other cancer, I could have been dead by now.
Nonetheless, since August 2010, I have been in what I would call the “cancer loop”. This means that I get scanned at least twice a year and then see the oncologist to find out if there has been tumor progression. The best outcome that I can have is called progression free survival or PFS. In between scans I get monthly shots of Sandostatin LAR which is anecdotally shown to slow tumor progression, although there have been no clinical studies to prove this outcome. The Sandostatin has ended the only symptom I had, which was very occasional (once every 2-3 months) flushing, which never bothered me that much. The monthly shots and the drug side effects cause me more angst than the flushing ever did.
Alternatives for my situation are surgery to remove the visible tumors or chemotherapy, which does not usually work that well for carcinoid patients. I could go to Europe to get a radio-nuclear therapy called peptide receptor radionuclide therapy (PRRT). This is known to shrink tumors but not to cure the disease. Steve Jobs and many other Americans had/have PRRT in Europe to treat neuroendocrine tumors because it is not FDA approved in the US yet.
Given that I continue to be progression free and feel no symptoms, I still question why:
A) I am getting treated at all?
B) I am taking Sandostatin when I have no symptoms and the drug has not been proven to slow tumor growth?
C) I would need a major surgery as has been suggested by Dr. Liu and presumably, my current NY oncologist?
My doctors think my tumors have been there for many years. If they are not bothering me, why should I do something drastic that could make the treatment worse than the disease? Perhaps if and when there is some symptom or progression I should then consider surgery? I’ve heard that carcinoid tumors are found in about 1% of autopsies of people who died from something else so perhaps mine were just found early and I might never have a problem or symptom. Is this just wishful thinking?
This week I am accompanying another carcinoid patient to a surgical consult. She is in a similar, though not identical, situation to mine and has been recommended for surgery. I am hoping to be a good listener and take notes for her. I also hope to learn about what is involved in this sort of surgery. I want to be better informed as I go through this journey and consider my options. I feel very lucky that I am meeting so many other people with this rare cancer through the online and local support groups as well as patient conferences.