Leiomyosarcoma diagnosis

FormerMember
FormerMember
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I'm 63, have been complaining to GP of breathlessness  for a couple of months and when finally given chest xray was told I had metastatic tumours in both lungs and liver. 2 months later, I still haven't an identified primary but was told yesterday that no surgery is possible and am waiting for oncology referral.  I'm a retired speech and language therapist so have some experience with head and neck cancer treatment and the damage that can cause. I  would  really like a ball park prognosis and no one will commit themselves..I really got my hope's up when I was phoned by the sarcoma team to say they had a plan.. so far the plan is " no surgery will help" Is there any help?

I want to be positive but am finding telling people I have cancer but am not being treated yet very wearing... everybody says " they can do wo ders , these days"  " I had breast cancer 18 years ago and I m still here" but they're not starting at the same point as me. 

Anybody else in the same boat?

  • Hi KBoo, just wanted to say hello. I've also recently been diagnosed with Leiomyosarcoma, I'm 46 and although mine was in the Labia I had to keep ringing the hospital to get surgery dates. I have had 2 surgeries, but now feel like I am left in limbo whilst Gynae/Oncology decide what to do. 

    Please keep ringing them and asking for an appointment to discuss, as even of surgery can't be done, there are other truants from what I've read on here.

    Stay strong

    Chrissy x