Leiomyosarcoma- How have you managed with no Oestrogen ?!

Hi Deb's, I'm 61 so went through the menopause years ago. If you read Rocky123 profile she mentions that because her LMS was hormone receptive she was given hormone treatment. It might be worth asking your consultant if your LMS is hormone receptive. Weirdly over a year ago I started having problems with continence and mentioned it to the practice nurse when I went for my smear. For the first time my smear test was agony. The nurse spoke to the GP who said that I might have vaginal atrophy and prescribed me vagifem pessaries which made a huge difference. I stopped using the pessaries when I was diagnosed with cancer. When I had my total hysterectomy they removed my uterus, overies and fallopian tubes but I haven't had any continence problems since.

I worked out how to read rambo123 profile but I'm not sure that's the same u issue. My tumour was "oestrogen stained" which means further tumours are more likely to develop if I give my body any oestrogen. So I've been told i need to avoid it. I think she's taking about hormone therapy to treat her cancer. It's all so confusing!

I think I'm also worried about achey bones and other horrible menopause stuff. I joined a medical menopause group and so many women have horrendous side effects

Hi Debs, 

I have LMS and they didn't do a hysterectomy due to my weight. My LMS was in my labia and 2 surgeries later its gone (for now). I fully anticipate a hysterectomy in due course, am currently perimenopause and no idea what the future holds. 

Just wanted to say you're not alone with the uncertainties x

Best wishes 

CHRISSY XX

Thanks Chrissy, i am sorry to hear about your LMS. I'm still a newbie to all this cancer lingo but i guess you know if yours is oestrogen positive? I think they whip ovaries out in that scenario? Do you now have to get regular scans to check for spreads like me? In my case it's lungs apparently.  Have you read much about prognosis?

Hi Debs,I was only diagnosed in January so still fairly new to this too. I have had 2 CT scans and am now scheduled for my next one in May with 4monthly check ups alternating between Gynae and oncology. I have a small node on one lung that hadn't grown and they are monitoring it. Prognosis is variable from what I've read and I'm not going to over research as most cases seem to be different . Keep me posted, I like to help of I can as we're all going through this tough time together x

My wife Janice had an emergency hysterectomy before the even discovered she had LMS, only diagnosed by a biopsy of a lymph node after it had spread to her lungs.

As they think it is probably Ostrogen sensitive they have her on Letrozole to essentially shut down the one ovary they left.

She has had two different types of chemotherapy that were both succesul in knocking back the cancer, though the first one caused a whole new set of problems - that have been fixed. The second one rendered the cancer stable and we have been living with cancer for over six years now.

<<hugs>>

Steve

Hi Steve hope you’re well , someone in group mentioned you’re wife was given an inhibitor can you explain what that is please , I hope you and you’re wife are still doing well .

Hi Keeb 

We are both doing fine at the moment thanks. Well apart from a cold for Janice and a fall for me anyway.

It is possible that my Janice's Leiomyosarcoma is sensitive/responsive to estrogen and so she is prescribed Letrozole to shut down her remaining ovary. Formally Letrozole is called a aromatase inhibitor. There is quite a lot of chat about Letrozole on some of the forums here as it seems some people tolerate one brand rather more easily and another but that seems to be a bit of a process of finding what works for each individual and then trying to get that specific brand in future.

<<hugs>>

Steve

Thankyou Steve pleased to see you and family are well !