Under his skin, in his words

I started to write all the sordid details about Robert's diagnosis with melanoma because otherwise it feels like starting in the middle. I decided not to write it, though, because his own summary tells the story much better than I could. The following comes from an email that he sent on May 29 to our families and a few friends. 

This email is a terribly impersonal way of telling you how our May has gone. It's not that Hazel or I do not want to talk to you, it's that we know each of you will have the same questions. So I'll try to provide the answers, at least the ones we now have.

In April I went to the dermatologist for my periodic inspection, and early in May he removed what appeared to be a sebaceous cyst from the back of my head. It appeared there as a small thing about a year ago and had grown slowly until a few months ago, when it got bigger.

He sent the thing off for a biopsy, and about a week later we learned that the lump was a melanoma. Because I have never had a mole or skin lesion that was diagnosed as a primary melanoma, never had any moles removed, and they could find no place on my skin where a melanoma had been but disappeared, this was diagnosed as metastatic melanoma.

Often, once primary melanomas are removed they don't recur. Metastatic melanoma is another matter altogether. It's the most aggressive form of skin cancer, far worse than the squamus cell carcinoma my mother had. For those of you who are blood relatives, that I have melanoma is a risk factor for you. Sorry.

Since then we have been to the melanoma clinics at the Washington Hospital Center and Johns Hopkins. I had a PET/CT, which showed no signs that the thing on my head has spread to any other parts of my body, or that it came from some other place. That's encouraging, but not a cause for celebration.

The next step is to do what is known as a sentinel node biopsy and replace the skin around the site of the cyst with a graft to make sure no melanoma cells were left behind. For the biopsy they inject dye around the cyst and see which lymph node(s) it travels to. Then they remove and biopsy the node(s) to see if any melanoma cells are present. If none are found that's very good because that is an indication the melanoma did not go beyond the cyst.

The problem is that they probably will never be able to tell whether I have primary or metastatic melanoma. Although most people who get melanoma initially have a mole or lesion on the epidermis, some people have what is called dermal melanoma, meaning the primary melanoma starts below the epidermis.

All melanoma cells look alike, whether they are primary or metastatic. Therefore, it probably will be impossible to stage mine, making arriving at a prognosis very difficult.

In any event, all agree that I need the sentinel node biopsy and plastic surgery before considering future treatment. I'm seeing the surgical oncologist later this week and probably will have the surgery in 2 or 3 weeks, depending on doctors' schedules.

There are at least three potential courses of treatment, depending on the results of the sentinel node biopsy. If they find no melanoma in the nodes, an experimental vaccine against the disease is a possibility, followed by regular monitoring. Hopkins and several other research hospitals have trials under way. If they find melanoma cells in the lymph node, chemotherapy with interferon might be advisable. Melanoma can have two genetic mutations, and if mine is one of those the treatment might include growing antibodies that target the specific mutation.

The doctors I've seen seem to agree on one thing, my general health is very good. They see that as indicating my melanoma, if it is metastatic, only recently got that way. They also think my body can handle the available treatments.

Again, sorry for doing this in an email. But repeating all of this to each of you, and telling you we don't know more, is not my idea of fun. We'll let you know when things become clearer. As I said at the beginning, it is not that Hazel and I do not want to talk to you. We just do not want to waste everyone's time ruminating unknowns.

P.S. If we've already discussed seeing you this summer we plan to be there. If we need to change our plans we'll let you know.

So, that's Robert's story, in his own words.

If you were not among our relatives or friends who received the email, please don't take that to mean anything about our relationship with you. Your email may have bounced because he didn't have your current email address in his contact manager. It's also possible that it got trapped in your spam filter because his subject line was "Tidings" - perhaps because he didn't want your email listing to have an ominous subject in it, or perhaps because he just couldn't come up with anything else. I'm willing to cut him some slack at this point, and I'm guessing you are too!


re: In His Own Words

Robbie & Hazel,

I must admit that I was taken aback by finding out about this in a group email, but I then thought about the alternatives and realized this was the only way to get the information across succeinctly, unemotionally (at least on paper) and uniformly, and Robbie really gave a very comprehensive explanation of everything--a dyed-in-the-wool journalist. 

I do feel helpless and restless, but that's not your problem--it's mine.  And I can only try to imagine what this must be like from your side of the looking glass.

Hazel, tell me more about why or when I should use drupal instead of wordpress, and, Robbie, keep writing and looking forward.

For what it's worth, we are here any time, and can be there at any time as well.