Hello,
My 80 yr. old father in law was just diagnosed with Merkel Cell Carcinoma 3 weeks ago. At first, they said the tests came back negative (3 times) for Merkel Cell. They said they knew it was a type of neuroendocrine tumor, but tests were inconclusive as to "what type" of neuroendocrine tumor. Finally, more pathology reports after his recent surgery to remove the tumor showed positive for Merkel Cell Carcinoma. He just had a brain MRI (normal results) and will be getting his PET scan results back later today, to see if anything has spread or not. At first, before seeing the oncologist and having the skin tumor removed from his head, his internist told him (and me, since I went along to his appt) that it's a "very slow growing cancer and we're not going to do anything because of his age and condition- which is recently diagnosed Alzheimer's). I was infuriated! First of all, even though he didn't have the Merkel cell diagnosis yet, tests were still inconclusive & no one had said it was slow growing- the dermatologist still believed it was merkel cell at the time, even though the biopsy was negative. This doctor went on to say that he should have the skin tumor removed and, if he still wanted a referral to an oncologist 8-10 weeks after surgery, he'd give it, BUT he'd really be against it if the oncologist wanted to "run a bunch of tests or do any treatment". I couldn't believe what I was hearing! It's like this doctor was from the Dark Ages or something. Even if my father in law is 80 and has early stages of Alzheimer's, it's certainly not up to the doctor to decide that he "doesn't need any CT tests because we're not going to do any treatment". I told my inlaws to never go back to that internist! I don't know if they'll listen, though. Fortunately, they have good insurance and can go to any specialist they want without needing any kind of referral from the internist.
His age and condition are definitely something to consider in having chemo or not, but that's up to my in-laws to decide, not up to their internist!
Anyhow- yes, we were all told this is rare. The oncologist said he's seen 4 cases of it in the last decade, so there isn't a lot of research done on treating it, consequently.
Best wishes to you in your fight!
Lisa