Endometrial Stromal Sarcoma found after hysterectomy

Sorry that you are going through this, it's a journey and everyone's journey is unique.

I was diagnosed with LGESS is 2002 and pretty much mirror what has already been said here by chellesimo. Immediate menopause after hysterectomy was not as awful as I expected, I had some headaches but nothing major.

In my case I had two further metastases, one to lung which I had removed and then again to pelvis which remains as they're inoperable but at that point I was given chemotherapy followed by radiotherapy which seemed to stun everything into submission (although my oncologist said they wouldn't have given that these days at that point.) and I then had 14 stable years with annual checks by CT.

Around Covid time my pelvic mets began growing again and I have new lung mets too so I have been on Letrozole (hormone therapy) for just under a year now. I tolerate it quite well despite being in. what feels like a second menopause. It's taken longer to make things stable this time, several months in fact but thankfully it has. I am monitored every three months now by a sarcoma specialist.

Any questions just ask, I hope your scan shows no further problems and your journey is as smooth as possible x

Thank you. I am just trying to be prepared as I can be for all scenarios and have a long list of questions for the medical team. 

I'm getting a gynae oncologist and the scan is 4th June. Then they'll make their decisions.

I've stopped my oestrogen and progesterone hrt (kept testosterone for brain fog and energy). And will what happens next. 

I take it you had a hysterectomy. Did they take lymph nodes out too? 

But thanka for sharing your story too x

Hi, yes you sound very prepared and grounded! I had my hysterectomy with the view that I had fibroids. I asked that they leave my cervix because I had heard that it can prevent later prolapse (I was in early 40's at the time). So when the lab results came in and showed LGESS I had to have the cervix taken then too. Nobody mentioned lymph nodes though I guess they might have taken some for testing too. I was given the all clear at that point but had a 1cm nodule in my lung a year later and the pelvic mets shortly after that. Most of this was due to the ignorance in those days about hormonal significance with LGESS because they had stuffed me full of HRT after the hysterectomy, even placing the first dose in the stump. You won't have to endure that these days x