Uterine sarcoma

Jane sorry you have had some sort of mix up with your account, I have alerted admin, they can sort that for you don't worry. Sorry to hear that about the lung mets. Try not to worry (I know that is easier said than done) until they get the results back from the fibroid they can't really say what treatment will be best. If it is hormone related there are lots of options treatment wise. Keeping everything crossed here for Friday for you x 

Ok thank you. It looks ok now but you were replying to messages three months ago and I wasn’t on here then 

thank you x

I'm not sure if I'm replying to the whole thread or just this comment!

I am wondering what you've been told about menopause in terms of removal of your ovaries. Presumably HRT isn't an option for us? I've tried not to read too much about uterine sarcoma as when I did yesterday I ended up in tears all evening! I'm having my ovaries and cervix out soon as they already took the uterus and fibroid. I got upset last night as although I'm lucky that it hasn't spread to the lungs I've realised this is something we now live with and scans are our lives going forward.  In terms of reoccurrence stats I'm not sure I've got a grip on that info.

Hi. My MDT meeting will hopefully tell me about HRT, as I was told by doctor ithat they need to see if it was hormone dependant, and then I can’t have HRT if so. 
I am feeling fine at the moment, touch wood, but maybe this will change. It’s all very unpredictable. 
I would be a lot happier if mine hadn’t spread to my lungs. I’m trying to just deal with one step at a time. It’s very overwhelming though. 
are you starting chemo after operation? 
x

Hi Jane 

Yes it's totally understandable that you feel overwhelmed.

I'm not sure about chemotherapy. If it's all been removed then I assume I won't need it but I know sometimes they can offer chemotherapy just in case as a preventative measure. I'm no expert! There's so much I don't know yet. 

I've got a massive list of questions for 1st September when I see them to hear about next steps. I'm scared and overwhelmed too.

Hi Deb

yes that’s true, maybe you don’t need it if it’s all been removed, unless as say, it’s preventative.

it’s all so confusing as say. 
sarcoma Uk is a good website, they called me and were really helpful. 
ive a list of questions too, and constantly thinking of more, even more so, when menopause will start too. I’me sure we will get there and feel better once we understand it a bit more , well, I hope so. 

My copied letter to my GP and the Christie said that the sarcoma in the fibroid was 1a but I have lymphovascular space invasion grade 2. There's only grade 1, 2 and 3. My daughter's have tried to convince me that it doesn't mean anything and made me promise not to consult Dr Google. I'm not daft though and I am aware of the implications. My appointment at the Christie isn't until the 7th of September which is a long wait. I rang to ask if I could have an earlier appointment but the cancer nurse explained that they want all the scans and biopsies ready for the MDT meeting. They also want their own sarcoma pathologist to re check the biopsies as they were originally done by a gynae pathologist. The waiting is driving me crazy. I've still got no appetite and I'm barely eating once a day. 

On a lighter note, we're in Llandudno for a few days with our daughter and grandsons. It's raining, freezing cold and every where nice to eat is booked up for weeks! We saw a woman pushing a dog pram whilst carrying a guinea pig today. It really cracked me up.