If I'm lucky it will be the last decision. Since the melanoma on my arm was staged as 1B, I am going to have the surgical oncologist remove the larger area around the melanoma and also the sentinel lymph node(s). Surgery is scheduled for April 8. I will go early in the morning for the radiation study that will find the right lymph nodes, then surgery will be early in the afternoon and I will be home by supper time. I'm blessed with insurance with an out-of-pocket limit that I will quickly exceed, so I don't have to worry about the cost of chosing the more significant surgery, just the recovery time.
Two reasons to decide to go ahead with the lymph node biopsy even though one surgeon said I didn't need it. First is that removing sentinel nodes really is the current recommended approach for melanomas with depth greater than .75 mm and a second risk factor (mine was .83 and had a miotic rate of 1 /sq mm). The second reason is a principle for making sense of low probabilities that I learned when I had CVS genetic testing with my first pregnancy: only do the test if the incidence of the problem you are testing for is greater than the incidence of complications from the test. In the case of sentinel node removal, the chance of finding something is 2-8% and the chance of complications is 1-2% (both according to my doctor). I am tempted to say that the chance of a benefit to me from this surgery alone is about 4% (calculated on the basis that I have a 5% chance of a positive node and an 85% chance that will be the only positive node). The risk of significant harm is very low--most of the possible complications are short term.
I realized also why I am so resistant to going with the standard treatment. When I was diagnosed with diabetes, I quickly found what would work for me. At the time, the standard for well-controlled diabetes was an A1c between 7 and 8 and a low fat diet--I decided to join the community of tight control diabetics and keep mine below 6 by eating low carb. It has worked wonderfully for me. I think the standard of care has since changed to A1c between 6 and 7, so the medical community has realized at least some of what a few mavericks and a community of patients reading the research literature understood 10 years ago.
When I started to research the melanoma decision I quickly learned that there is no good treatment for melanoma that has spread and the standard of care does not have much to offer. Neither of those hit me as a big surprise. My husband's illness (Multiple System Atrophy, a form of Atypical Parkinson's) has no treatments that actually slow down the disease, they only relieve symptoms. And my own experience with diabetes was with realizing that the standard of care was lousy. So I jumped right to looking for an alternative to the standard of care, but it is harder to take those kinds of approaches with cancer because the risks are so much higher. Thankfully, there is a good chance that after this surgery I will have done all that I need to do.