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

Any support group for high grade endometrial stromal sarcoma?

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.

@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 there, 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 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

@swagner2024 Did you have your appointment at Mayo for the second opinion on March 19? If this was your first visit to Mayo what was your experience?

@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.

@lamorr You are such a blessing to your mother with coming here to support her. It's encouraging that the High Grade Endometrial Stromal Sarcoma was caught early and that her post surgery CT scans show no evidence of disease.
I was diagnosed with Endometroid Adenocarcinoma FIGO Grade 1, Stage 1a in 2019. I had a recurrence in 2021 and had radiation therapy. My anxiety comes and goes knowing that this cancer (or other cancers) might be active in my body. I have another cancer surveillance appointment coming up on April 30 and I'm anxious about it. It's wonderful that your mother has maintained her positivity and especially that she works at it.

What did her Ob/Gyn say about the red dot she found on her labia? Was it recommended that your mother return to her oncologist for an exam?

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