Hi Joanna and welcome to Cancer Chat.

I'm sorry to hear you were diagnosed with endometrial stromal sarcoma back in 2018 but I'm really glad the injections you've been having have managed to keep it under control.

A member called Madrid_01 made this post about ESS just under 2 months but apart from them, I haven't been able to find anyone else posting about this lately.

You may be able to find others with this diagnosis and support groups that you can join through the bone and soft tissue cancer charity Sarcoma UK, but if you have any other questions you'd like to discuss with one of our cancer nurses, you can give them a call on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m - 5p.m.

I hope this helps and you're able to connect with others soon.

Kind regards,

Steph, Cancer Chat Moderator

Hello. I chose Letrozole as my first line treatment without surgery and there is limited information on this. I have researched LGESS thoroughly though and am quite knowledgeable on this condition should you want to chat..

Hello. I chose Letrozole as my first line treatment without surgery and there is limited information on this. I have researched LGESS thoroughly though and am quite knowledgeable on this condition should you want to chat..

Hello Madrid, I have had  chemotherapy which was unsuccessful so now on lexetrole which is usually given to breast cancer patients what is your opinion ?

I am not sure I am connected to you as I am not used to sending messages please acknowledge if you have received this communication thanks 

Letrozole has a good track record for treating HR+ LG-ESS even though there are limited studies for its use as a first line treatment. It has fewer and milder short term effects but does have some more serious long term effects. In terms of treating BC I think you should post your question online for the nurse as I can't really comment on this. 

I have been living with endometrial stromal sarcoma for 15 years. I had a hysterectomy but kept one ovary, I was then was wrongly prescribed HRT which made the sarcoma grow again, this time in my lungs. I started letrozole and zoledex, then switched to anastrozole because of the side effects. I have just stopped the zoledex as it is believed I am now through the menopause so is no longer needed. 

Happy to chat with anyone who is going through this diagnoses. 

Hi Wss diagnosed endometrial cancer 2023 since then had 3 failed  chemotherapy attempts  went on lexetrole now been stopped end of!!I I am fit 81 so maybe that’s why last Ct showed small I’m increas in endometrial and liver, but no other new parts  yeti living on knife  edge!

Hi IGUANA  I am sorry the chemo didn’t work for you. How long were you on the letrozole before they stopped it? 

 Months 3 no reason given, left highs dry !