1. < Gynecologic Cancers

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

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jspr422 | @jspr422 | Aug 9 10:09am
In reply to @nzq21p "Thank you so much.. your replies are so comforting.. Are you perfectly healthy and able to..." + (show)
@nzq21p

Thank you so much.. your replies are so comforting..
Are you perfectly healthy and able to do things like before the diagnosis? I feel like I never be normal again.. 😥

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It took several months to recover from the hysterectomy. At this time, I feel very healthy physically and can do all the things I did before my surgery and diagnosis. Mental health has its ups and downs. I have come to accept my "normal" is now different from pre-diagnosis. Everyone is different in how they recover and move through something like this, though.

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nzq21p | @nzq21p | Aug 9 2:02pm
In reply to @pn1998 "Merry Christmas!" + (show)
@pn1998

Merry Christmas!

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Hi..I haven't seen any posts.. how are you doing now?

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nzq21p | @nzq21p | Aug 9 2:03pm
In reply to @pn1998 "I’m in cycle 4 of 6 cycles. Thank you for the information about the support group...." + (show)
@pn1998

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.

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Hi..how are you doing now?

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nzq21p | @nzq21p | Aug 9 2:09pm
In reply to @colleenyoung "Hi @darren12, welcome. As you likely already know, endometrial stromal sarcoma tumors start in the supporting..." + (show)
@colleenyoung

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?

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Did anyone try fasting or water fasting to minimize chemo side effects and also kill cancer cells? I have been reading positive impact of fasting on cancer..

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leahinaustin | @leahinaustin | Sep 7 12:47pm
In reply to @gidget6 "Hi, I also have ESS which is treated with hormone blocker. Have you received any direction..." + (show)
@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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So sorry your wife and you are dealing with this. I was diagnosed with ESS stage 4b in 2018. I had the radical surgery and then started hormone AI. Lots of side effects for me. Bone and joint pain, nausea, extreme fatigue and more. The best advice I can give is for her to do the research on nutrition and decide what lifestyle changes she can make. The lifestyle changes in sleep, diet and exercise really do make it easier to deal with this. Also, as someone who has a very supportive and loving husband, knowing that you are not in this alone is huge. Good luck and sending you positive energy.

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nzq21p | @nzq21p | Sep 9 4:40pm
In reply to @jspr422 "It took several months to recover from the hysterectomy. At this time, I feel very healthy..." + (show)
@jspr422

It took several months to recover from the hysterectomy. At this time, I feel very healthy physically and can do all the things I did before my surgery and diagnosis. Mental health has its ups and downs. I have come to accept my "normal" is now different from pre-diagnosis. Everyone is different in how they recover and move through something like this, though.

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I finally had my hysterectomy thru robotic laproscopic.. still waiting on pathology report..how are you doing?

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nzq21p | @nzq21p | Sep 9 4:59pm
In reply to @ccwill "Dear @darren12 My heart goes out to your wife whose cancer is rare and also metastatic...." + (show)
@ccwill

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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I don't think they offer any chemo let alone immunotherapy (keytruda) for low grade ESS.. and I hear that it didn't work for lot of high grade people.

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ccwill | @ccwill | Sep 10 9:55pm
In reply to @nzq21p "I don't think they offer any chemo let alone immunotherapy (keytruda) for low grade ESS.. and..." + (show)
@nzq21p

I don't think they offer any chemo let alone immunotherapy (keytruda) for low grade ESS.. and I hear that it didn't work for lot of high grade people.

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Dear @nzq21p -

Please reference the following article from cancer.gov titled "More Immunotherapy Options Approved for Treating Endometrial Cancer":
https://www.cancer.gov/news-events/cancer-currents-blog/2024/endometrial-cancer-durvalumab-pembrolizumab-chemotherapy
Each patient's oncologist will determine the best treatment plan for her based upon the type of tumor, it seems, and less about the grade.

If the endometrial cancer is low-grade but high-stage, it means that:

- Low-grade refers to the cancer cells' appearance under a microscope. They resemble normal cells and are less aggressive, indicating a slower growth rate.
- High-stage refers to the cancer's extent and spread. Despite being low-grade, the cancer has spread to other parts of the body, such as lymph nodes, organs, or distant sites.

In this scenario:

- Treatment may be more extensive due to the cancer's advanced stage, potentially including surgery, radiation, chemotherapy, or a combination.
- Prognosis (outlook) may be less favorable due to the cancer's spread, despite its slower growth rate.
- Regular monitoring and follow-up care are crucial to manage the cancer and address any potential recurrence.

The cancer. government article helped to address my concerns about being on the drug for two years:

"When endometrial cancer is found early, it can often be cured with surgery alone or surgery followed by radiation or chemotherapy. However, the prognosis is poor for people with endometrial cancer that has spread (metastasized) or returned after initial treatment.

FDA had already approved pembrolizumab and dostarlimab to be used alone to treat people with advanced dMMR endometrial cancer that worsened after initial chemotherapy. The approvals were based on clinical trials in which both drugs improved progression-free survival.

Those positive results led researchers to test these drugs as part of the initial treatment of people with advanced endometrial cancer."

I trust this information helps to clarify ESS treatment options for all.

Blessings,
CC

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