We've received confirmation that the spot in lung was a small single 6mm synovial sarcoma secondary tumour. This news was expected although still difficult to receive as there is always an outside hope that it is something else. I'm swinging through the angry, sad and denial stages with this and still struggling to rationalise and come to terms with the development and poor prognosis. Although its very slow moving, this disease its unrelenting and very hard to eradicate.
In response to my post on the Synovial Sarcoma Survivors Forum "coming to terms with mets" a friend provide this response which I though was worth reposting:
Hi Gary, there are several sub-groups in the mets club.
One is made of people who after lung surgery never see the disease come back. I met a lady online who was still in remission 15 years after her lung surgery. Obviously, this group has very few members as far as I can tell but I am still hoping I can join it one day...
Then there is the group of people who keep having recurrences but are able to go back into remission for a while every time. An example is me or Gina who was diagnosed in 1991, had 7 lung surgeries, was 5 1/2 years stable with yondelis and posted in July this year on the Sarcoma Alliance website (that's 20 years fighting with this disease!).
Then there is a group of people who get a "second chance" in that they are told nothing can be done, surgery is not possible and their prognosis is death within a few months but they get into a trial or find a bold surgeon and somehow go back into remission and improve significantly their prognosis. One of this patient is Hema who had some success with the NIH trial, went from 17 mets to 3 (the last 3 were removed surgically).
Then there is a group of people who can't get into remission but are eligible for trials and are able to keep stable for a while, sometimes several years like in Gina's case. In the meantime there is always the hope that some miraculous treatment will come out.
And finally there is the group that is not even eligible for trials and is only eligible for hospice :-( I am hoping to never join that group. I am not sure I can face death in such a direct way... Elodie
The few positives that I have at play here, is that there was only one small secondary tumour. This has been slow to grow and generally you don't get one you get many secondaries. It was successfully removed with clear margins and it is possible to get a curable outcome from this surgery and for it now to go into longterm remission. The recovery from surgery has gone well and I will be physically fully healed in a couple of weeks.
Until I hear different I claim membership to Elodie's Met Club 1, if another medical procedure is required in the future I'll confront that when the time arises. I don't think you should bury your head in the sand with a poor prognosis, although it seems pointless getting ahead and over-analysing what may occur. For all of us there is uncertainty in the future and I guess the best option is just get on and enjoy life.
Gary
