Leiomyosarcoma

Hi Krazychrissy and welcome to our special club. My wife has Leiomyosarcoma though in her case it was found after an emergency hysterectomy that was very a bit too late really.

In my wife's case she had secondaries in her lung that rendered her incurable. Two different chemotherapies though have managed to shrink the tumours a bit and more importantly stopped them growing. She has been stable and not on treatment now for 6 years and gets checked out every nine months to a year.

There are a few with Leiomyosarcoma on here, sometimes it just gets called LMS - whenever Janice tells a doctor she had it they end up looking it up on wikipedia. 

There is a bit more information over on the Sarcoma UK website including the list of specialist centres we were lucky in that we lived quite close to Oxford anyway,

<<hugs>>

Steve

Hi Steve, thank you for replying. I am really pleased to read that your wife's tumours have shrunk and requires no more treatment at this time.

I am in Nottingham, so fortunate that close to a specialist centre. They haven't graded me yet as they are waiting for tissue following my next surgery.

CT scan shows I have no secondaries, which I believe is rare (though they have marked a small bit on my lung to watch over next year). 

Hoping for a good outcome next week, but we will have to wait and see.

Thank you for sharing your wife's journey 

Hugs 

Chris

Hi Chris hope you’re well , do you mind me asking what size you’re lung nodes we’re and if they have remained stable ?

Hi Keeb, my lung node is 3mm. I'm due a scan next month but it hadn't changed last year

Hi Krazzychrissy. 

I was diagnosed with leiomyosarcoma 5years ago, i was 42yrs. Mine was found in my oblique muscle. I has radiotherapy for 6weeks in the Royal Marsden London. Then just before Christmas I had a operation to remove all my right hand side oblique and part of my hip. It was a massive operation  (extremely  painful) but  I was lucky to have fantastic family and friends who all helped me immensely. I was so very lucky that mine was a grade 2 and completely removed by two amazing surgeons. I have just got my 1yearly checks instead of 6mnth checks which is just amazing. They have told me that it's very unlikely that this will come back. I have nodules on my lungs but they think this may be scar tissue due to bronchitis.  So I now have MRI scans and just a scan on my lungs.  Hope this helps you feel much better about this.

Lots of hugs 

Karen

Hi Karen,

Thanks for your reply, always great to hear positive news. It sounds incredibly painful what you went through,  but great there is no reoccurance. I am nearly 2 years post surgery and thankful like you that it hasn't shown anywhere else (I am also having CT on my lungs as they are unsure if it's scarring or not).

Hugs

Chrissy x

Hi Chrissy,

It's so nice to hear that your 2yrs on, are you on 6month checks? How are you doing now? I was just reading your story and you sounded very scared. Life changes so very quickly doesn't it! Where were you treated? Xxx