What's in a name?

My quest for a “name” for Robert’s melanoma came to an end today when we saw Dr. Lipson at Johns Hopkins Hospital. We were there for the one-month follow-up after Robert received the last of four sets of injections with the melanoma GVAX vaccine as part of a clinical trial at Hopkins. I hope my question today about whether Robert’s melanoma has been classified as “nodular” marks the last time I ask for a name.

I’ve been playing around with this question of “what kind of melanoma is it?” for a while now, and the reason has been obvious to me. I wanted the diagnosis to be “primary dermal melanoma” because the long-term prognosis seems to be better. I didn’t want the diagnosis to be “nodular melanoma” because this kind is described so often as “the most aggressive type of melanoma.”

When we saw Dr. Timothy Wang at Hopkins in January, he summarized Robert’s case by calling it nodular melanoma. I’m sure I bristled – I may have told him that I don’t think anyone ever called it that – but I didn’t pursue it at the time because it didn’t seem germane to what we were there for (learning how to look at spots). I brought it up today with Dr. Lipson because it’s been nagging at me for nearly six weeks.

Dr. Lipson explained that the diagnosis of nodular melanoma is a pathological one based on the layers of the skin involved and the way the lesion grows. He explained that for a long time scientists thought that people with nodular melanoma didn’t have as good long-term survival rates as those with other types. Now, he said, more recent studies have shown that’s not really the case. This may be because nodular melanoma doesn’t appear to the naked eye the way traditional melanoma does, and so it gets caught later – after it’s had a chance to grow and go deep into the skin. Most important, Dr. Lipson said that clinicians don’t differentiate between nodular and other kinds of melanoma – they treat it the same way and look for the same mutations. It may be different from a diagnostic standpoint, but “from a management standpoint it doesn’t change what we do.”

One of the pathology reports said Robert’s melanoma was either nodular or metastatic. If those are the choices, obviously I’d prefer nodular, but maybe it’s time for me to just let this be. Dr. Lipson assured me that the medical folks have the same debate about whether it’s nodular or metastatic in cases like this because often the way nodular melanoma appears, it looks like it came from somewhere else in the body. But at the end of the discussion, it doesn’t really matter. They have done what they can to help Robert fight any cancer left in his body. They will continue to monitor him so that if any cells are floating around in there, either from another site or because this one was so big and so deep, they’ll catch it early enough to do something about it.

Obviously there’s a lot more going through my mind right now. I’ll try to pull those thoughts together and write about them soon. In the meantime, we’re fine – Robert appears to be healthy, and I’m in a good frame of mind. Next stop: scans at the end of April. And in the meantime, snow! Stay safe and warm, everyone.