Friday, December 23, 2011

Coming to terms with metastatic cancer

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. 



  1. Sorry to hear this bad news Gaza.

    I hope things improve soon and the damned cancer leaves for good.


  2. This latest twist along the path is horrible and our thoughts are with you all.

    I want to say something, positive, resonant and meaningful, but my words fail me. So I turn to others more wise and erudite:

    “Hurihia to aroaro ki te ra tukuna to atarangi kia taka ki muri i a koe.”

    Turn your face to the sun and the shadows fall behind you. ~Maori Proverb


    Never, never, never give up. ~Winston Churchill


  3. Thanks for support guys, physically Ive got over this last operation OK and mentally doing OK. Happy New Year Gary

  4. Hi Gary,

    I'm really sorry to hear about your lung met, although things seem to be going not too bad in this turn of events - they caught it early, just one there and removed it with clear margins. Hopefully that's the end of that. Although if they do find anything else, at least you've still got the other lung to rely on, you could just become another one lunger like me, it's not so bad, I climbed my first munro with one lung today! :) Although that would mean more rib spacing, so hopefully not.

    How are your ribs? Mine are still very tender, especially at the front, after six months! I watched a thoracotomy on you tube and I couldn't beleive how far they space your ribs, and how pliable they are. Made me cringe though.

    I hope other than that you're doing well and focusing on all the wonderful things in life.


  5. Please let us know how are you.
    wishing you the best!!!!

    flavia from buenos aires


Thanks for your comments Gaz