Low Grade Endometrial Stromal Sarcoma

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Phxmom
Phxmom Member Posts: 3 Member
edited November 2023 in Uterine/Endometrial Cancer #1

I know this is a very rare type and as such I don’t see much in here about it. Newly diagnosed and haven’t even seen my doctor post hysterectomy to discuss treatments. I would like to hear from others.

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  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
    edited November 2023 #2
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    Phxmom, I am sure others will be along to add their support as well. Even looking at treatment guidance that is posted on this site:

    Endometrial stromal sarcoma

    Stages I (1) and II (2)

    Early-stage endometrial stromal sarcoma is commonly treated with surgery: hysterectomy (removal of the uterus) with or without bilateral salpingo-oophorectomy (removal of both fallopian tubes and both ovaries). Some young women who are still having regular menstrual cycles may be given the option of keeping their ovaries. Pelvic lymph nodes might be removed if they look swollen on imaging tests or feel abnormal during the operation, but this has not been shown to help women live longer.

    After surgery, most women with stage I (1) cancer don't need more treatment. These women can be watched closely (observation) for any signs that the cancer has returned. Women with stage II (2) cancers might be treated with hormone therapy and sometimes radiation to the pelvis. These can lower the chances of the cancer coming back, but they have not been shown to help patients live longer. This type of uterine sarcoma does not respond well to chemo, and it's not often used at these early stages.

    Women who are too sick (from other medical conditions) to have surgery may be treated with radiation and/or hormone therapy.

    PLEASE, and everyone on this site will jump and down about it, make sure you are working with a Gynecologic Oncologist. The additional training they take is very important for surgery and treatment.

    Also ask that they do a genetic assay. While the surgery may take care of it all, having this done at the time of is much better for you. Treatments continue to change, and there are biomarkers that respond to newer immuenotherapies based on this information.

  • Phxmom
    Phxmom Member Posts: 3 Member
    #3
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    https://csn.cancer.org/discussion/comment/1710576#Comment_1710576

    Thank you so much for connecting. I do see a gynecologist oncologist and see him next week to discuss treatment. Unfortunately it is metastatic and shows nodules in my lungs with clear lymph nodes post surgery. This is after 14 years clear of Breast Cancer Her2+. I was always afraid of a second cancer but was feeling relief as I was approaching my 15th year. All this has brought my world upside down again.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
    #4
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    ahhh...thank you for the additional information.

    Were you on any additional, ongoing treatment after the BC? I would suggest asking about a genetic biomarker test as new markers pMMR, dMMR, P53, POLE, and a few others, do respond to new treatments. (I'm coming up on 11 years out and they would not treat me the same today as they did back then)

    Please remember, you are a statistic of one. Dr Google is an idiot but a good Gyn Onc is worth their weight in gold. Let us know how it goes and, good or not, be sure to push for answers. Hugs dear one.

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