Endometrial stromal sarcoma (ESS): What treatment did you get?

Hi @darren12, welcome. As you likely already know, endometrial stromal sarcoma tumors start in the supporting connective tissue (stroma) of the lining of the uterus (the endometrium). We here in this group can certainly help to support you and share experiences to help you support your wife. This must've come as a shock to both you and your wife.

If you are looking for a second opinion, I highly recommend the Mayo Clinic for complex, rare cancers. You can self-refer on behalf of your wife or request that her currently physician submit the referral. You will find all the information to get started here: http://mayocl.in/1mtmR63

Darren, has it been determined if her ESS is low-grade or high-grade? How is she doing? How are YOU?

Thanks, she has been confirmed as low grade, we are keeping positive and has started taking hormone blockers today in the hope this will, slow down or hopefully shrink the small nodule on her lung.

Any support group for high grade endometrial stromal sarcoma?

Anyone diagnosed with high density ESS? Any support group?

Hi @pn1998, welcome. Can you share a bit more about your experience with high-grade endometrial stromal sarcoma? How was it discovered? What treatments have you had?

I have back pain with gas pressure on the left side in the middle of the night for the past 3 years. After being told to eat more fiber and drink more water during that time, I was finally referred to a GI nurse practitioner. By that time I felt a nodule in the lower right groin. A sonogram was performed and a mass in my uterus was found.

A full hysterectomy was completed Memorial Weekend 2023. I’m halfway through chemo and then will have radiation. My pathology report post surgery came back with high density endometrial stromal sarcoma.

@pn1998 The delay you experienced in getting an accurate diagnosis is heartbreaking. How many more cycles of chemotherapy will you have before you start radiation? Are you able to get emotional support from family and friends?

There is a Mayo Clinic Gynecological Cancer Support Group that meets on Zoom monthly on the 2nd Monday every month from 5:30 to 6:30 p.m. Eastern time. The next meeting will be on September 11. It is moderated by a Mayo Clinic oncology social worker and you are very welcome to attend. Might this be something that interests you?

Here is the link:

I’m in cycle 4 of 6 cycles. Thank you for the information about the support group. so far I haven’t chatted with anyone who has the same type of cancer I am battling.

I still have the lower back pain/gas pressure on the left side. Seeking relief.

It’s good to know that you are more than halfway through the chemotherapy treatments. I’ve attended the virtual support group a few times and while the kind of gynecological cancer each of us had was different I found that talking about how I was feeling and receiving empathy and support from the groups as very helpful.

The continued back pain/gas pressure on the left side must be disheartening in the context of your surgery and chemotherapy. How are you seeking relief for the pain?

Hi @pn1998 -- I also have been recently diagnosed with high-grade endometrial stromal sarcoma. I had a hysterectomy this fall and the recommendation for me is no chemo/radiation at this time, but close monitoring for the next several years. This came completely out of the blue and has been very overwhelming and scary on many fronts, as I'm sure you know.

I'm so sorry to hear about what you are going through. Please know you are in my thoughts. I hope you continue to find good support as you go through treatments and beyond.