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

Hi All,
I have just been diagnosed with a high grade of ESS. I had a hysterectomy (not at Mayo). The pathology report took 4+ weeks to get back. I still haven't seen the pathology report but my doctor (not from Mayo) told me that this is the diagnosis. The doctor didn't know how to treat it. He was going to meet with a group of doctors to discuss a treatment plan which is why I decided to go to Mayo. They will do their own pathology report. Anyway, it's a scary diagnosis. I just joined this board to see what everyone's experience has been with this disease that is so very rare. I am encouraged after reading some of these comments that Mayo is the right place to be for treatment.

@naturegirl5
Hello. Yes I had the appointment. They agreed with my oncologist for observation every 3 months and a CT scan every 6 months. I will have my checkup in June with my local Dr. I had a great experience at Mayo in that I got a blood test, CT scan and met with a Dr. all in one day. It was nice not to have to wait weeks to hear results. I feel good now. Of course you can't always go by how you feel. I am hoping I don't have to have any more treatments or surgeries from this disease. Thanks for asking!

Hello @nzq21p — my heart goes out to you. What a shocker indeed to get this diagnosis.

I am of similar age to you, post menopausal for eight years and in very good health. I had a sudden onset of very heavy bleeding — no other symptoms — and went to the gyn immediately. An ultrasound showed nothing and an endometrial biopsy was negative. You can imagine how surprised and shocked I was when a follow up ultrasound two months later revealed a softball-sized uterine tumor and a second biopsy was positive for endometrial sarcoma. I am very fortunate to have a great medical team that recognized the need for quick action. I had a full hysterectomy about a week later.

Since there was no evidence of spread, the standard of care for me was surgery only (no chemo or radiation). I am now in “surveillance” to monitor for recurrence with scans every three months for two years, less often after that. So far so good but there is a long road ahead.

Have you learned anymore about your treatment plan? I hope you are feeling supported as you go through these first months. Please reach out with other questions, I’m happy to share my experience. My thoughts and prayers are with you.

Hi..what were your symptoms, treatment and prognosis..I am just told I have ESS-HG, I had 2 instances of minor spotting 2 months apart, I am 59, postmenopausal for 10yrs.. no other symptoms at all, healthy weight and no other health ailments like BP, diabetes or anything.. D&C done for a polyp removal revealed this diagnosis..totally shocked..

@swagner2024 — my heart goes out to you. I am acutely aware of the feelings of fear and overwhelm as I also have high grade ESS, diagnosed late last fall. Though we knew after my hysterectomy that the tumor was sarcoma, the final pathology report took 4+ weeks for me also. What a long time to wait! In my case (Stage 1b) the protocol is no chemo or radiation and I am now in surveillance with a CT scan every three months.

I am glad to hear you are going to the Mayo. One of the best things I did after my diagnosis was have a consult with a gynecological oncologist familiar with uterine sarcomas. This person answered many questions and filled in gaps in my knowledge. It’s so hard to find good information with such a rare cancer!

My thoughts are with you. Please update us when you know more if you feel comfortable doing so.

Hi..what were your symptoms, treatment and prognosis..I am just told I have ESS-HG, I had 2 instances of minor spotting 2 months apart, I am 59, postmenopausal for 10yrs.. no other symptoms at all, healthy weight and no other health ailments like BP, diabetes or anything.. D&C done for a polyp removal revealed this diagnosis..totally shocked..

@jspr422 Thank you for reaching out. It is so great to hear from someone that is going through the same situation. Everyone thought it was crazy that I had to wait so long for my pathology report. It's good to know of someone else who experienced the same thing. By the way, what state are you in?

So, my local doctor (one that is a gynecological oncologist) called me and said he presented my case to a group of doctors that review tumors and their recommendation is just observation. Yesterday I had a follow-up appointment from my hysterectomy and met with the nurse practitioner. The Dr. never told me what stage I was in. The nurse told me I was in Stage 1 which is a huge relief. She also told me that all the cancer was removed with the hysterectomy. Another piece of information I did not get from my Dr.

Anyway, I am feeling much better about things after my appointment yesterday. I too will have observation every 3 months and a CT scan every 6 months. (No chemo or radiation). My appointment for a 2nd opinion is at Mayo on Mar. 19. I am anxious to see if they recommend the same.

Thanks again for your encouraging and insightful response. I look forward to hearing how your journey is going with this super rare disease. (I asked the nurse practitioner how many people she sees with this and she said maybe 1 per year and that's in Chicago!) Please share updates if you are comfortable doing so as well.

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.

Hi there, (I shared this above but thought I would share with you as well) my mother, who is 61, was recently diagnosed with High Grade Endometrial Stromal Sarcoma officially after a full hysterectomy. Post surgery CT scans are “clear” but she is currently receiving radiation as the chance of recurrence is high (they said chemo wouldn’t do much and radiation is kind of questionable too) and it was found in I believe 2 lymph nodes that were also removed. Back in Sept 2023 she noticed just a small red dot on her labia which prompted her to go to her OB. All research articles I read on this include mostly those who have had it spread to the lungs and or other parts of the body. Trying to figure out prognosis…etc etc. Welcome to reach out if needed. Surprisingly my mother has worked hard at maintaining a positive outlook and is trying hard to stay in good spirits -L