Hello from Limbo!

Robert explained early on, after meeting with one of the top melanoma experts in the country, that it probably will be impossible to stage his melanoma. Here’s the problem with that: treatments are generally decided depending on the stage of the disease. So, how do they know which path of treatment is the best for him? Welcome to Limboland!

If you read the information on the web about melanoma, you’ll understand where we are right now. In particular, I commend to you the National Cancer Institute’s pages on melanoma treatment: http://www.cancer.gov/cancertopics/pdq/treatment/melanoma/patient/. First the NCI site leads readers through the general information and staging of melanoma. Then, as you’ll see in the left sidebar, there is a general page describing treatment options, followed by a link for “Treatment Options by Stage.” I looked and looked, but I couldn’t find any information about treatment options for patients with unstaged melanoma.

So, the doctors won’t say that this is “melanoma in situ,” which is considered stage 0 – a form of cancer that hasn’t spread and usually is not very big or deep. Neither will they say it’s stage 1, which applies to tumors that are at most 2 mm thick. Reading the NCI information, it appears to be stage 2B, which applies to tumors that are more than 4 mm thick and haven’t broken the skin.

That is in keeping with what Dr. Jang, the oncologist at the Washington Hospital Center, told us Wednesday. However, Dr. Boisvert, the surgeon who performed the sentinel node biopsy, and Dr. Convit, the plastic surgeon, had said the WHC doctors were treating it as they would a melanoma in situ. This explains Dr. Jang’s suggestion that we go into this period of “watchful waiting” to see if the cancer reappears near the same site or crops up somewhere else in/on Robert’s body.

The prognosis for melanoma in situ is so much better than the other stages that I would love to believe that is what we are dealing with. The 5- and 10-year survival rates are 99%-100% when the cancer is caught at that stage. At stage 1, the survival rates stay quite high. When you get down to stage 2 the rates drop to 53%-81% five years after treatment and 40%-67% after 10 years, and at stage 3 they are lower still.

It’s the “not knowing” that makes this difficult. I want to believe that this is melanoma in situ, but when they offer to get Robert into a study that’s for stage 3 patients I am confused and scared. If there is anything we can do to ward off another brush with melanoma I want to know about it, and I want the information necessary to weigh the risks of every option.

We have an appointment with Dr. Sharfman at Hopkins in three weeks. So once again, I guess, we’ll wait!