from finding appropriate care.
For background, I have two cancers (one rare) - and a daughter with a very complex rare disease for which there is no known treatment, and both treatment and diagnostic options are often deemed experimental. We often have insurance battles (I've only lost one, because in that case the doctor ordered a test the insurance company considered experimental, ignored the flag their system threw telling her it was experimental (so we could have chosen not to have the test) AND - the doctor refused to provided appropriate documentation to support her assertion it was not experimental)
First - ask your doctor what they hope to gain from the PET/CT fusion scan which they cannot obtain solely from a CT scan. I am not claiming to be an expert - but because of our conditions, I'm pretty adept at making quick assessments that are at least sufficient to prompt specific questions for your doctors. Here, quick research suggests if your melanoma was caught early the PET/CT fusion scan may be less useful than for other cancers because it sometimes misses smaller metastasis (early stage) and sometimes even larger cutaneous metastasis (isolated case reports of the PET/CT fusion scan missing larger tumors in the skin which, within the body, the scan is very good at picking up).
Second - if there are specific reasons to push for this test (rather than just a CT scan), is it necessary to have the test completed before surgery. I.e. will it change the course of surgery, or only change post-surgery treatment (radiation or chemo). Again - my quick research suggests this test is most useful for staging (especially later disease staging), which generally impacts treatment post surgery. The one surgical difference appears to be identifying lymph node involvement, so they can be removed during the initial surgery. It is pretty standard when removing tumors to also remove sentinel lymph nodes (the ones to which the cancer is likely to spread first) to test for spread to the lymph nodes. Does your doctor expect to remove lymph nodes during surgery? Would having the scan results change this?
(If you don't have answers from your first doctor for these questsion - ask the second doctor, then go back to the first and ask that doctor and compare the answers.)
If I were in your shoes, and the scan results would only impact post-surgical treatment, I would push the doctor for surgery before resolving the insurance battle over the scan. In other words, don't let an insurance battle delay surgery, unless the added information from the fusion scan has a significant likelihood of changing the course of surgery. Get that thing out of your body, because the longer it is there, the higher the chance that it will metastasize. Decisions about post-surgical treatment are less urgent, and there is often a delay in beginning treatment while you heal from surgery. You can continue the insurance battle during that period to guide the post-surgical treatment.
Finally - make sure you understand the rejection. Are they rejecting it because it is still considered experimental - or because they believe equivalent (less expensive/less dangerous) tests will provide sufficient information.
If it is the former (experimental), that is an insurance company decision that is hard to overcome. I have had one experimental treatment approved based on clever arguments made by my doctor about the progression of acceptance of the treatment for other diseases and the alternative cost to the insurance company for the accepted treatment ($900 days v. 2+ weeks of hospitalization).
If it is the latter, you have a better chance because it is your doctor, with specific information about your condition, who can articulate why, in your case, a variation from the insurance standard is warranted.
Good luck!
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