Hi,
My partner has just been diagnosed with low grade endometrial stroma sarcoma (at least grade 1b). She had a large fibriod which was degrenerating and so had a hysterectomy 6 weeks ago, we have only just been told about them finding this (it took over 5 weeks for them to diagnose it) She is waiting for a ct scan and to now have further surgery to remove overies and cervix. We have been told its rare and the team that are dealing with her don't know much about it. Wanted to reach out to anyone that could possibly help us with some more info about it? I'm googling and I really wish I hadn't!
Hi Sazf
Welcome to the online community.
I am sorry to hear of your partners diagnosis of endometrial stroma sarcoma.
I had a different type of endometrial cancer (there are several different types). Mine was carcinoma sarcoma.
It may be worth posting in the womb group as I can remember other ladies with a similar diagnosis. The link will take you to the group where you will be able to see previous posts of ladies who have had ESS.
Womb cancer forum | Macmillan Online Community
There is also some info in the link below that may help.
Endometrial stromal sarcoma | Sarcoma UK
Although it is always a shock to have such a diagnosis, it does seem promising that it is a low grade cancer. These are less likely to be aggressive and less likely to spread. Stage 1b, if confirmed is also early stage and confined to the womb. The scans will be to double check this. For endometrial cancer the usual first line of treatment is a hysterectomy so your partner has already got that out of the way. The further surgery, although I can understand is a worry, would be the normal parts taken during a hysterectomy for womb cancer.
My surgery was April 2022, I had some follow up treatment (not everyone does) and remain well 2 years later.
Hope this helps. If there is anything you need to ask, please do so. We also have the Support Line if you have any medical questions for the nurses or if talking things through would help.
Jane
Hi Sazf I have low grade endometrial stromal sarcoma. I have been living with it since 2009. It is a very rare sarcoma, less than 1% of womb cancers are LGESS. When I was diagnosed in 2009 far less was known about it. The important thing as part of the diagnoses, is to test if the sarcoma is oestrogen positive. Most LGESS are. This means that the sarcoma feeds off of the oestrogen, so your partner would need a hormone blocker called an aromatase inhibitor. This is usually letrozole or anastrozole which comes in tablet form. I have been on aromatase inhibitor since 2014 and my sarcoma is stable.
Please take a look at my profile page by clicking on my name or profile picture. It is best not to google the condition, you will not get an accurate picture from google, the information on there is very outdated.
Hi Mollymilly I am sorry to hear that you also have LGESS. I hope you are recovering well from the hysterectomy. I also have lung mets, but mine were found 5 years after my hysterectomy. I didn't do well on letrozole myself, so swapped to anastrozole, but everyone is different. Many women who have had breast cancer also take letrozole, and speaking to them I have found that just as many have no side effects a those that have a hard time on them.
If I can help to answer any of your concerns please do reach out to me, and I will help in any way I can. Not many of us LGESS around so we have to stick together.
Good luck for your scan Rebecca42
Scans are always such a worrying time. My next one is in January. I know you are in the USA, do you get your scan results the same day where you are? I know some do. We have to wait about 2 weeks here, sometimes longer.
Sazf great to hear your partners ct came back clear. I wish her all the best for her surgery in January.
