Looking for others in similar situation-endometrial carcinoma recurred

Posted by clo7277 @clo7277, Sep 11, 2023

I'm also new to this site and trying to figure out the best thing for my care. I have been told way too many times that my case is "unique". which makes it very hard to find anyone that has a similar experience.

I was diagnosed with endometrial carcinoma in March of 2022, 10 years after I had a hysterectomy and it was found in my liver and diaphragm. Just recently found out I have a recurrence.

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

Hi clo,
Did you have a hysterectomy 10 years ago because you had endometrial cancer?

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No it was for extensive endometriosis. Then had another follow-up for more endometriosis to be taken out a few years ago.

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What treatments have you had since March, 2022?

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surgery, chemo and hormone suppressant meds

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@clo7277 This must have been devastating when you received the diagnosis. Had you been diagnosed with cancer prior to 2022? If I might ask, when you received the first diagnosis in 2022 what treatment did you have then? Did your hysterectomy spare ovaries, fallopian tubes or cervix? My understanding is that even when the uterus is removed during surgery endometriosis can grow back after surgery.

With the chemotherapy and hormone suppressant meds how are you feeling today?

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@naturegirl5

@clo7277 This must have been devastating when you received the diagnosis. Had you been diagnosed with cancer prior to 2022? If I might ask, when you received the first diagnosis in 2022 what treatment did you have then? Did your hysterectomy spare ovaries, fallopian tubes or cervix? My understanding is that even when the uterus is removed during surgery endometriosis can grow back after surgery.

With the chemotherapy and hormone suppressant meds how are you feeling today?

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No cancer prior to 2022. When first diagnosed it was surgery and then chemo. The first surgery for the hysterectomy took the uterus and cervix, second surgery for Endo also took out fallopian tubes along with more Endo. Third surgery was the one that took out the tumors and they also took the ovaries. The chemo I had was brutal and I'm still dealing with side effects. With this recurrence there is talk of a different chemo pair to try so I'm hoping for less side effects.

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@clo7277

No cancer prior to 2022. When first diagnosed it was surgery and then chemo. The first surgery for the hysterectomy took the uterus and cervix, second surgery for Endo also took out fallopian tubes along with more Endo. Third surgery was the one that took out the tumors and they also took the ovaries. The chemo I had was brutal and I'm still dealing with side effects. With this recurrence there is talk of a different chemo pair to try so I'm hoping for less side effects.

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@clo7277. You've been through a lot in the past ten years and I can only imagine how you felt in 2022 when you received the cancer diagnosis. I was diagnosed with endometrial cancer (endometroid adenocarcinoma, Stage 1a, FIGO Grade 1) in 2019 and had a hysterectomy that included uterus, ovaries, fallopian tubes and cervix. No further treatment was recommended. I had recurrence in 2019 and treated with radiation therapy but not chemotherapy. So, I haven't had chemotherapy however there are many women in this Support Group who have and their experiences vary. Since you're still having side effects (neuropathy? What else?) it surely was brutal for you as you wrote.

Do you know what chemo treatment is under discussion now? If you do and there are members I know who have had that treatment I can then tag others to bring them into this discussion.

You can use the Search box at the top of this page by typing the name of the chemotherapy and then figure out which discussions you'd like to read. The Search function is powerful and will turn up discussions in the past and present.

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Side effects are the neuropathy and the brain fog that are the worst. The chemo they want to do now is carbo/doxil.

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