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

Posted by darren12 @darren12, Sep 17, 2022

My wife has just been diagnosed with endometrial strongly sarcomas ESS. This is a very rare type of cancer which was found when she was having an hysterectomy and has now developed in her lung. I’m looking for some advice on what the best way to help her and also for a second opinion on how best to treat this cancer.

Thanks

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

@jspr422

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.

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I am sorry you are having to go through this, also. Just finished my chemo treatments and met with the radiation oncologist today to discuss the PET scan results. I will start 5 weeks of radiation treatments in a couple of weeks. I live in Missouri. Where are you located?

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@naturegirl5

@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:
https://connect.mayoclinic.org/event/gynecologic-cancer-support-group-women-of-s-teal/

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@naturegirl5 -- thank you for providing this link. I have registered for the December session.

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@pn1998

I am sorry you are having to go through this, also. Just finished my chemo treatments and met with the radiation oncologist today to discuss the PET scan results. I will start 5 weeks of radiation treatments in a couple of weeks. I live in Missouri. Where are you located?

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Hi @pn1998 -- it's good to hear your treatments are moving forward. I hope you are feeling ok. I am located in Minnesota. What stage were you diagnosed with?

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Stage 4b, age 62, no symptoms prior to diagnosis

I haven’t found many women battling HGESS. One in Ohio and one in Illinois. I continue to keep you in my prayers. Have a blessed Thanksgiving!

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@darren12

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.

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Hi, I also have ESS which is treated with hormone blocker. Have you received any direction or nutrition mainly as to what foods to avoid, if any?
This seems such a rare cancer, and I have not seen much information on it.
Thank you

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@pn1998

Stage 4b, age 62, no symptoms prior to diagnosis

I haven’t found many women battling HGESS. One in Ohio and one in Illinois. I continue to keep you in my prayers. Have a blessed Thanksgiving!

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You are in my prayers also. I hope your treatments continue to go well.

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@gidget6

Hi, I also have ESS which is treated with hormone blocker. Have you received any direction or nutrition mainly as to what foods to avoid, if any?
This seems such a rare cancer, and I have not seen much information on it.
Thank you

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Hello @gidget6 --

So sorry to hear about your diagnosis. I agree, it is frustrating to not be able to find much information about ESS. The only nutritional advice my doctor provided was to eat healthy, whole foods (with an occasional "treat"). Have you heard other advice?

You are in my thoughts and prayers.

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Hello!
No, I have not heard anything regarding diet. I am curious about soy products in particular? I do eat healthy and exercise regularly. I would avoid foods that are counterproductive, but on many professional medical sites, this type of cancer doesn't even pop up. Geez. How has your journey been overall? Thank you for your reply and prayers. I pray for you and everyone else with cancer, caregivers, and medical professionals trying to help us.

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Dear @darren12

My heart goes out to your wife whose cancer is rare and also metastatic. In My estimation, usually with taste forms of cancer time is of the essence to get her chemo treated as soon as possible. The best drug is called Keytruda. It works wonders for ask types of cancer, especially lung cancer. However, every individual is different because it's a targeted drug and works best on patients with mismatched cells. She will need a genetic test to determine this. Any chemo treatment administered every three weeks with Pacitaxol leaves patients weak and causes hair loss etc. but if your doctor reduces each dose 20%, patients tolerate it better. I hope your wife will be eligible for Keytruda. It's a miracle drug. May God bless and keep you both.

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@darren12 , @gidget6 , @pn1998

Hello to all,

Just wanted to let all of you know I am thinking of you as we head into the holiday season. This cancer stuff is tough, especially with rare cancers such as ours. My hope is all of you will have many moments of joy in the coming weeks. Prayers and hugs!

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