dian in spokaneParticipant
- August 25, 2010 at 5:53 pm
Welcome to the board. Sorry you have to face this shocking diagnosis. It sounds like they have not yet found a primary melanoma, and that your PET showed no organ involvement. That likely makes you stage III with an 'unknown primary' Though you can expect to have doctors inspecting you trying to find that primary. Right now, the primary or lack of one is less important that the acuality of your stage III disease.
Don't worry about your doctor abandoning you. In my opinion, one of the differences between a good doctor and a great one is the ability to recognise when one is out of one's depth. Melanoma originating in the head and neck is VERY serious, and sending you to MDA is the right call. Going directly to the big guns is what you need.
Another thing you need is to read and get up to speed on this disease, which you might not have known a single thing about a few weeks ago. Despite the fact that MDA has great doctors, you still need to be deeply involved in your own treatment decisions.
You may be facing more surgery, if they think they can get clear margins, and/or localizes radiation. They might discuss chemotherapy or some kind of biochemo, but MDA is also involved in several cutting edge clinical trials, and most would agree that, because of the poor treatment options availalbe for higher staged melanoma, I clinical trials hold the best hope.
Having said all of this, I'd offer some encouragment too. You'll likely read a lot of really grim stats on the web, but right here at the MPIP, we've got quite a few success stories, people who've been living with melanoma for many years (my initial stage 1 diagnosis was in 1983.. I advanced to stage 3 in 03, and stage 4 in 08)
and.. John McCain had melanoma centered in his neck..and still ran for president!
Keep your spirits up. This is a fine site for support and educations and networking. If you have some sleepless nights, get on here and learn to search the archives and patnet to bring yourself up to speed.
dian in spokane