Endometrial stromal sarcoma

Hello. Is anyone out there also living with this rare cancer? I have been since 2018 when a mass was found in my abdomen. Since then I have been treated with Letrozole and Zolodex injections every 3 months. I have had no surgery so far. What has your treatment been?

  • 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.