MMMT survivors

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Susanna23
Susanna23 Member Posts: 66 Member
edited September 2023 in Uterine/Endometrial Cancer #1
Hi to June, Jan and all the other MMMT ladies
Just wanted to check in with you. I had a check-up today with my surgeon and all seems to be fine. It was just a physical exam - they don't believe in routine scans at UCLH - but I feel reassured. Just fyi I was stage Ia and had TAH/BSO in November 2010 with removal of several lymph nodes and washings - all negative. I had six rounds carbo/taxol as adjuvant therapy Jan-April this year because my oncologist warned that MMMT (though we call it endometrial carcinosarcoma here in the UK) has higher risk of systemic recurrence than the more common adenocarcinoma.
I have a referral next month to the London Hospital for Integrated Medicine, where I am going to get further advice on nutrition and also hopefully continue with Reiki and learn more about visualisation techniques. I try to do a lot for myself on that side of things though I am far from perfect in compliance!
I noted today sneaking a look at the doc's computer screen that they've got me booked for next four years' appointments - but he said they are going to refer me back to my local gynae next year.
I have learned a lot, and continue to do so, from this site and will continue to visit regularly.
Hope you are all doing well
Susan x

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  • gneal10
    gneal10 Member Posts: 4 Member
    #2
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    Wow! That’s a wonderful report! I had a complete hysterectomy, 6 rounds of Chemotherapy, and 6 weeks M-F of radiation over the top and vaginal. I was diagnosed with stage 1A Carcinosarcoma MMMT. That was April 2019, surgery May 2019, and chemotherapy then radiation to follow. Completing my treatments December 30, 2019. I recently had a CT Scan and there are tumors in my pelvic. I go for an ultrasound on September 18th. I just got all my hair back and am afraid because my first occurrence the tumors were very small and confined to my uterus. All lymph nodes were clean. Why did my cancer come back so fast! And you had 13 years of no reoccurrence. I hope they have a better treatment because I am not ready to punch my clock!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,368 Member
    #3
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    gneal, I am sorry to hear you are getting ready to get in the fight again so soon. If they did not do so, please be sure to ask about genetic assays. There are treatments that are found to be effective due to the genetic make up of the cancer.

    Please let us know how it goes on September 18.

  • gneal10
    gneal10 Member Posts: 4 Member
    #4
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    NoTimeFor Cancer:

    Thank you for the information. Appreciated. I will ask about Genetic Assays. I heard about a treatment that helps your own cells fight against the cancer, is this the same type of deal? I will keep you posted and thanks again for the information.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,368 Member
    #5
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    The genetic testing tells them things about the cancer - is it a dMMR, pMMR, POLE, etc and trials show that cancers with these markers respond well to different immunotherapy. The goal would be that chemo and/or radiation are not always the first line of treatment. It is the genetic makeup of cancers that should lead the type of treatment. We aren't there yet but getting closer.

  • gneal10
    gneal10 Member Posts: 4 Member
    #6
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    NoTimeForCancer:


    Thank you for explaining. Appreciated. I really hope they know more about this type of cancer and can rid me if it once and for all. :)


    Have an awesome day.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,368 Member
    edited September 2023 #7
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    Here is some of the mutations mentioned in this article. It is specific to Endometrial Cancer so I hope it helps.

    https://www.cancernetwork.com/view/endometrial-cancer-molecular-classification-may-predict-radiotherapy-response?utm_source=sfmc&utm_medium=email&utm_campaign=09132023_CN_GSK-23-OND0682_TRC_Endometrial%20(3-6)&eKey=ZV9kb2xpbmFyQGF0dC5uZXQ=

  • gneal10
    gneal10 Member Posts: 4 Member
    #8
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    NoTimeForCancer:

    Thanks so much. Appreciated.

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