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Leiomyosarcoma Uterus

KathH56
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Hello 

I’ve just been diagnosed and trying to get my head around it, so the internet has been scary and I wish I hadn’t bothered! A CT scan done pre hysterectomy about nine weeks ago showed no mets so that’s good but I’m still frightened and would appreciate hearing from anyone who has had or is living with this.  

Thank you 

x

  • Offline

    Hi KathH56

     

    Apology for jumping on the back of your post. Had my diagnosis confirmed to day - Hysterctomy three weeks ago. Awaiting scans and oncology appointment. I avoided the internet until today- like you wish I had kept it that way.  However, I’m holding on to what the oncology nurse said ‘taking one day at a time’. I crazily looked at the prognosis for stage 3- yes I’m stage 3 of a rare cancer.  I think I would be scared if I wasn’t so numb. I think the hardest thing is the sense of twilight zone and powerlessness. My counter at this stage is to be as strong as I can...I think they’re going to eventually go with aggresssive chemo - but have to wait and see. So will focus on each day and find or make positive opportunities for me...there is nothing else I can do.  I not sure if that’s a help. I stumbled on this page because I can’t sleep and in the dark being positive is hard - but it’s more powerful than the alternative.

     

    Take care

  • Offline in reply to Adi1245

    Thank you for posting. 

    Ive stopped going on the internet - you must too! Every day at a time I keep telling myself but yes as soon as your head touches the pillow boom the mind goes into overdrive. What’s helping me atm is relaxation stories- The calm App ( free for a month! ) 

    Some days I’m dead positive others all I think about is my family. But I’m here now

    Keep talking and take care

    xx

  • Offline in reply to KathH56

    Hi Kath

    I am glad you able to be positive, in my experience that’s really important. If you haven’t had your hysterectomy yet - try not to worry. I had mine three weeks ago and after the first week and abit symptoms are lessening. The important thing though is not to do too much at all. Let your body heal.

    i hope this helps and thanks for your advice to. I have another week before scans and a plan so I’ll deal with the sarcoma then!

     

    You take care.

     

  • Offline in reply to Adi1245

    Had my hysterectomy 6 weeks ago- horrendous first week then not too bad . Also having said to myself no more internet I rang the nurses on this site and felt better after I’d spoken to her. 

    Three month check end of September for which I’ll be relieved to get over.

    Hope you’ve stayed off that b*****internet too

     

  • Offline in reply to KathH56

    Hi all, was diagnosed with stage 1b lieomyosarcoma . Had surgery 12 weeks ago and first CT was normal. I seen to be living scan by scan. Can't seem to move on

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