A frustrating day at WHC

We arrived at Washington Hospital Center in time to be at the check-in desk at the Cancer Center at 1 p.m., the time of our appointment. Our past experience had led us to believe that they always tell you your appointment is about 1/2 hour before they expect you to see the doctor. Don't we wish that was really their system!

There were moments, during the 1 3/4 + hours that we waited to see Dr. Boisvert, when we thought of leaving. The plastic surgeon had given us copies of the pathology reports, and we thought we knew everything he would be able to tell us. But I still had questions, so we read on our iPads until he finally came in.

After feeling Robert's remaining lymph nodes (not sure why - maybe just to make us think he was doing an examination?), he told us that because there was no evidence of cancer left in Robert's body, we should come back in three months to see him and Dr. Venna, and forget about it in the meantime. What? Huh? That's it - that's all there is to say? I noted that we hadn't yet met Dr. Venna but really wanted more information about what they were thinking about Robert's case, so he went off to find Dr. Jang, an attending physician who serves as the oncologist for the Melanoma Center, whom we had met on an earlier vist. And so, we waited again ...

Eventually Dr. Jang came in. Essentially, he said that they consider this to be the primary site, and they normally just follow up with such patients every three or six months to see if the cancer came back. I asked what stage he thought the cancer was at, and after some mental figuring based on the depth from the path report on the skin (7mm) he said Stage II. He said the adjuvant therapies with interferon were expensive and had the potential to do more harm than good in someone Robert's age ... Our interpretation is that Dr. Jang wasn't very interested in Robert's case. Robert's too old and the therapy is too toxic? Really? So, we left.

While I found Dr. Jang's staging to be somewhat of a relief, I was dubious ... and Robert and I talked about next steps. Before we could come to any conclusions, Dr. Jang called later in the day to say there was a trial of a new interferon substitute that's much less toxic, and he faxed us a sheet about a randomized study in which two-thirds of the test subjects get the substitute and one-third get the interferon. The sheet said it was for patients with Stage III melanoma, but Dr. Jang said that because of the size of Robert's melanoma (first reported at 9.5 mm) he thought he could get into the trial ...

Well, I don't think so! First of all, I want to go through the entire thought process on this. Robert's is an unusual case in that we don't know whether this was a "primary dermal melanoma" or metastatic. I guess that makes it a "melanoma of unknown origin." We are heartened by the news that there is no evidence of spread of the disease and they consider Robert to be "free of disease" at this point. But after first telling us that Robert doesn't "need" adjuvant therapy and may be too old for it, and then offering us this option to be in a blind study that may not get him the less risky drug ... well, I don't think so!

There may be other options. Dr. Sharfman, the clinical head of the Hopkins melanoma program, talked with us about a vaccine that shows promise in stopping or delaying any recurrence of the disease. So, we plan to go back to the north side of Baltimore, where we will meet with someone who 1) specializes in melanomas of unknown primary origin, and 2) will talk with us at length and tell us about all the uncertainties, all the possibilities, and all the options. If he believes it would help to get one more opinion, we'll go wherever he suggests. And, at least to see Dr. Sharfman we are unlikely to wait almost 2 hours after our appointment time to see the doctor.

Actually, in retrospect I'm not sure WHC has a system at all for their Wednesday clinic days. I wonder if they don't tell everyone to come at the same time and then just put you in a room and see people according to what time they arrive, or whatever random (or perhaps thoughtful) order they decide on. At any rate, we have three months to decide whether to go back for the re-check. And in the meantime, we'll pursue other options.