Leiomyosarcoma

Hi

Wondering if anyone can advise please?  Was diagnosed with Leiomyosarcoma following sub-total hysterectomy last year for removal of fibroids.  I then went back to have ovaries and cervix removed.  Have recovered well and feel great, but went to GP yesterday as was coughing up blood.  Chest x-ray has shown 5cm mass at base of trachea. Go for CT scan on Monday and results on Wednesday.  Usually very positive and like to get on with things.  Heartbroken and scared.  Don't know what to tell family especially my beautiful teenagers.  Any advice/words of wisdom gratefully received.  Thank you ️

  • Hi there. I'm so sorry to hear this. I haven't really got any knowledge to offer you, though I wish I had, but I want you to know someone is thinking of you.

     

    Sending you lots of love.  

    AK

  • Hi there, so sorry to hear about your diagnosis. It must be so stressful for you, the waiting is the worst and of course having to tell family. Maybe wait until after you've had your scan results before you tell your daughters as you will most likely be told the next course of action. My mum had Leiomyosarcoma. She had a full hysterectomy following removal of fibroids (she was bleeding a lot) but some of the bad cells had spread onto other organs. I remember One of the oncologists she saw saying that it could have been prevented had she had a course of radiotherapy or chemo with her surgery but her doctor never suggested that. How did you find out you had fibroids? Did you have any bleeding or other symptoms? Were you offered any treatment like radiotherapy to eliminate the risk of cells spreading?