Low grade endometrial stromal sarcoma

444. Hi Claire and a warm welcome to the Online Community. Good to read your op went well but you had some pain after. Some breeze through with little discomfort, like me, others suffer a little longer.  I agree the wait for histology results is exhausting with anxiety at peak levels but once they're in your team will move swiftly to get a treatment plan in place.

We have a lovely group of supportive ladies here who are all at the start, in the middle, or at then end of their roller-coaster ride so feel free anytime to drop in and chat, rant, whatever. Read through some of the posts and reply to any that seem relevant to what you're looking for.

If you type Endometrial Stromal Sarcoma into the search bar at the top of the page over 30 results come up including one I noticed where the diagnosis was over 12 years ago. 

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. It's free to call on 0808 808 00 00  8am to 8pm, 7 days a week. Have a look to see what is available by Clicking here .

There is also an Ask an Expert section, but you should allow two working days for replies from our expert team.

Sending you welcoming hugs, B xx 

Hi thanks for your welcoming and helpful reply, I’ve had a look where you mentioned, thank you. I’m sure I’ll be popping into the group regularly , hope you are keeping well ? Xx

Hi Claire, I have leiomyosarcoma which is also very rare and aggressive. I saw my consultant at the Christie hospital on Tuesday who told me that I'm in remission but if it comes back it is usually in the first two years. It is resistant to chemo and radiotherapy so even though I have some lymphovascular space invasion I won't have any adjuvant therapy but will have scans, x-rays etc every 3 months. Have you had your staging yet? Mine is stage 1A, grade 2. Take care, Deb

Hi Deb, thanks for getting in touch. I got my staging last week and it’s 1b, like you I’m not having any adjuvant treatment, as you say the sarcomas are not very responsive to it. I’ve been told there is a high risk of it returning elsewhere, but it is often later with the stromal sarcomas so could be 5 - 10 years so I’ve been told to be vigilant for any changes in my body. I’m not having regular scans but will be seeing the consultant regularly. Saying that I’m waiting for results of an MRI to my shoulder so I’m hoping that’s not related. I’ve recovered well from my surgery but now have gone straight into menopause so am working out how to deal with the hot flushes and night sweats.

How are you coping with it all ? It’s such a mixed bag of emotions isn’t it, especially for you with the more aggressive sarcoma, how are you dealing with it all? 

Take care 

claire x

1. Hi Claire, I'm 61 and went through the menopause in my 40's so I haven't had the hot flushes etc. I just wish I didn't have the cancer on my mind 24/7 I have spoken to Rocky who was diagnosed in 2008 and has had six surgeries for lung Mets since and is still here so that has reassured me. Although the 3 monthly scans are going to be stressful and the fact that it will be for many years means that it is a constant reminder that we have a life long condition. I already have a life limiting condition (non alcoholic cirrhosis of the liver) which was diagnosed in 2018. I've just got my appointment for the CT scan, it's on the 20th October and the consultation is on 16th November. My diary consists of hospital appointments and blood tests at the gp's and not much else! Keep in touch and take care. Deb