Clear Cell Endometrial Cancer + ATM gene mutation

Posted by sabwal @sabwal, Aug 22 11:50pm

I was just diagnosed with CCEC from a biopsy and still have a CT scan to determine next steps. I've been reading a lot about this aggressive cancer and various treatments. I'm wondering if anyone has the genetic mutation of the ATM protein as well. Since it's a repair gene mutation, I'm not supposed to be exposed to radiation. But that seems to be a critical part of the CCEC treatment.

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

I have CCEC but as far as I know, not the ATM gene. Here’s a link to FORCE, a cancer support and information group for those with hereditary links to cancer. This might get you started. I am sorry about your diagnosis. All of us here know the fear of being in the newly diagnosed tornado.
https://www.facingourrisk.org/info/hereditary-cancer-and-genetic-testing/hereditary-cancer-genes-and-risk/genes-by-name/atm/cancer-treatment

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@sabwal Welcome to Mayo Clinic Connect and to our Gynecologic Support Group. I'm glad you found us. This is a warm and supportive group of women. There have been so many advances in cancer diagnosis and treatment, including gynecologic cancers that I expect the molecular testing that you've already had - and will have more - will be key in your treatment recommendations.

Here is an article about that subject:

CURE: Gynecologic Cancer Awareness Month:

-- https://www.curetoday.com/view/gynecologic-cancer-awareness-month-what-every-woman-should-ask-her-doctor

If you have difficulty opening this page, then you might like to sign up for CURE. It's no cost and a reliable and valid website.

The majority of us have been through the utter shock of diagnosis. When I learned of my diagnosis of endometrial cancer (endometroid adenocarcinoma) I got myself turned around on very familiar roads on my way home. I took one wrong turn and wound up in a neighborhood where I'd never been. Thank goodness for GPS.

When is your CT scheduled? Do you already have an appointment scheduled with your oncologist to go over the CT images and discuss treatment plans?

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Profile picture for Helen, Volunteer Mentor @naturegirl5

@sabwal Welcome to Mayo Clinic Connect and to our Gynecologic Support Group. I'm glad you found us. This is a warm and supportive group of women. There have been so many advances in cancer diagnosis and treatment, including gynecologic cancers that I expect the molecular testing that you've already had - and will have more - will be key in your treatment recommendations.

Here is an article about that subject:

CURE: Gynecologic Cancer Awareness Month:

-- https://www.curetoday.com/view/gynecologic-cancer-awareness-month-what-every-woman-should-ask-her-doctor

If you have difficulty opening this page, then you might like to sign up for CURE. It's no cost and a reliable and valid website.

The majority of us have been through the utter shock of diagnosis. When I learned of my diagnosis of endometrial cancer (endometroid adenocarcinoma) I got myself turned around on very familiar roads on my way home. I took one wrong turn and wound up in a neighborhood where I'd never been. Thank goodness for GPS.

When is your CT scheduled? Do you already have an appointment scheduled with your oncologist to go over the CT images and discuss treatment plans?

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@naturegirl5 Thank you I will read this. One of my doctors sent me an international write-up about my particular cancer - it is "rare" so there isn't a lot of literature on it and it seems doctors are still not confident in treatments that work well. My CT is scheduled for Wed Aug 26 (my 26-year wedding anniversary also). Hopefully the procedure doesn't knock me out for the rest of the day because I'd like to go have a nice dinner with my husband. Do they go over the images right away? I've never had a CT scan done - know nothing about it.

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Profile picture for sabwal @sabwal

@naturegirl5 Thank you I will read this. One of my doctors sent me an international write-up about my particular cancer - it is "rare" so there isn't a lot of literature on it and it seems doctors are still not confident in treatments that work well. My CT is scheduled for Wed Aug 26 (my 26-year wedding anniversary also). Hopefully the procedure doesn't knock me out for the rest of the day because I'd like to go have a nice dinner with my husband. Do they go over the images right away? I've never had a CT scan done - know nothing about it.

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@sabwal ...You should have been given directions for your CT! You might be told not to drink anything for a couple of hours before. If it is "with contrast" you will be given something to drink when you arrive, then wait for an hour (more or less, probably less).
You'll be fine afterwards but maybe very slightly queasy for an hour or so afterwards if given a contrast agent.
I am not a medical professional- this is from my own experience!

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Profile picture for hlthcr2000 @hlthcr2000

@sabwal ...You should have been given directions for your CT! You might be told not to drink anything for a couple of hours before. If it is "with contrast" you will be given something to drink when you arrive, then wait for an hour (more or less, probably less).
You'll be fine afterwards but maybe very slightly queasy for an hour or so afterwards if given a contrast agent.
I am not a medical professional- this is from my own experience!

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@hlthcr2000 I'm going to assume that I will be sent directions a day or two before the procedure, but thanks - I'll peruse my emails. So many notifications...perhaps I missed something on one of them.

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