Healthy runner- how did this happen?

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I am so confused & so are my doctors. I have been a super healthy person all my life- runner, vegetarian, thin, always on time with my check-ups.  I had my ovaries & tubes removed about 5 years ago because I was prone to cysts. Went through menopause with no issues & out of nowhere had one episode of Post -Meno bleeding. My gyno-oncologist at MSK told me I do not fit the bill for a women that gets this, but wants to test my blood for "Lynch Syndrome". I have 3 beautiful daughters & I am afraid for them. I had an endo-biopsy that came back showing stage 1. I am scheduled for a Hysterectomy tomorrow-soooooo scared. Just started the prep (colonoscopy prep). My endo lining was 13mm thick. Afraid they are going to find that cancer has spread!

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  • MAbound
    MAbound Member Posts: 1,168 Member
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    one step at a time

    Uterine cancer diagnosis and staging is a process that takes some time and it just doesn't pay to get ahead of yourself with worry here. 

    I suspect that your endo-biopsy shows grade one rather than stage one endometrial cancer because staging is done post-op and grading is done from the tissue they took when you had your biopsy. Grade one is the least advanced wherease grade three is advanced, so odds are they are catching this early for you. Staging is based on the extent of spreading of cancer cells found in the tissue removed during surgery. The lab determines if the cancer is contained to where it originated or has it spread to outside of the uterus into the lymph system or elsewhere in the body.

    Finding out whether or not you have Lynch Syndrome is a good thing for both you and your daughters. They and their doctors will have a heads up about the increased risk for getting this and other cancers, especially colon cancer, that you didn't have.

    There currently is no screening test for endometrial cancer but one may be in the pipeline. If that doesn't work out, your daughters should be aware of all of the risk factors for this cancer such as the Lynch Syndrome and give some thought to prophylatic hysterectomy as they approach menopause. Starting to have colonoscopies younger than normal and having them annually is another precaution when you have Lynch Syndrome. I have Lynch Syndrome and while my daughter is holding off on getting herself tested, she's made her doctors aware of what's going on with me, so  they are being extra vigilant with her now. She had early onset menses and now has PCOS, so along with the Lynch Syndrome she's at high risk for getting one of these cancers. It sucks, but at least she has the heads up about this that I wish I had had.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,386 Member
    edited September 2017 #3
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    MAbound said:

    one step at a time

    Uterine cancer diagnosis and staging is a process that takes some time and it just doesn't pay to get ahead of yourself with worry here. 

    I suspect that your endo-biopsy shows grade one rather than stage one endometrial cancer because staging is done post-op and grading is done from the tissue they took when you had your biopsy. Grade one is the least advanced wherease grade three is advanced, so odds are they are catching this early for you. Staging is based on the extent of spreading of cancer cells found in the tissue removed during surgery. The lab determines if the cancer is contained to where it originated or has it spread to outside of the uterus into the lymph system or elsewhere in the body.

    Finding out whether or not you have Lynch Syndrome is a good thing for both you and your daughters. They and their doctors will have a heads up about the increased risk for getting this and other cancers, especially colon cancer, that you didn't have.

    There currently is no screening test for endometrial cancer but one may be in the pipeline. If that doesn't work out, your daughters should be aware of all of the risk factors for this cancer such as the Lynch Syndrome and give some thought to prophylatic hysterectomy as they approach menopause. Starting to have colonoscopies younger than normal and having them annually is another precaution when you have Lynch Syndrome. I have Lynch Syndrome and while my daughter is holding off on getting herself tested, she's made her doctors aware of what's going on with me, so  they are being extra vigilant with her now. She had early onset menses and now has PCOS, so along with the Lynch Syndrome she's at high risk for getting one of these cancers. It sucks, but at least she has the heads up about this that I wish I had had.

    Can't top what MAbound said.

    Can't top what MAbound said.  Take a breath and find out what is going on.  If it turns out to be cancer I am sure MSK will get you to work with a gynecologic oncologist.  Please come back and let us know how it all went.

  • Nellasing
    Nellasing Member Posts: 528 Member
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    Shoregal

    1st of all welcome- I'm glad you found us before you got too far into this.  You will find such amazing info. and stories here.  You have already run into two of our amazing sisters and I want to echo what they said- take a deep breath and do your best to not get too far ahead in your thoughts.

    Sounds like you have some amazing things going for you healthwise and that will help with your recovery and because you have been regularly checked and on top of things it is possible this is in it's earliest stages.

    All the best with your surgery tomorrow!  We'll be with you in spirit.  Let us know how it goes when you can.  (((HUGS)))

  • shoregal
    shoregal Member Posts: 9
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    Nellasing said:

    Shoregal

    1st of all welcome- I'm glad you found us before you got too far into this.  You will find such amazing info. and stories here.  You have already run into two of our amazing sisters and I want to echo what they said- take a deep breath and do your best to not get too far ahead in your thoughts.

    Sounds like you have some amazing things going for you healthwise and that will help with your recovery and because you have been regularly checked and on top of things it is possible this is in it's earliest stages.

    All the best with your surgery tomorrow!  We'll be with you in spirit.  Let us know how it goes when you can.  (((HUGS)))

    Thanks For Your Good Thoughts

    My husband & I will be driving into Manhattan soon for my surgery. Nice to know I have friends I can open up to when I get home. 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
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    Welcome Shoregal,

    Welcome Shoregal,

    As the others have said, you have come to the best place for support, understanding, advice and love.

    I hope all goes well with your surgery and you recover quickly.

    I also have Lynch. I found out the same day they told me I have cancer. It isn't the end of the world. It gives you a heads up to get all of your screenings done on time, every time. l never look forward to the prep for the colonoscopies but hey, at least I sleep through the procedure. My doctor is letting me go to every 2 years now instead of every year as long as my results stay clean.

    Please come back and let us know how you are feeling when you are up to it.

    Love and Hugs,

    Cindi

  • Kvdyson
    Kvdyson Member Posts: 790 Member
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    Good luck to you, Shoregal.

    Good luck to you, Shoregal. As you may discover, most cancers are spontaneous and have no cause that could have been prevented by life style choice, fitness, food or genetics. There is only so much control we humans have over how (and how often) our cells divide. The good news is that is sounds like yours was found quickly. You will have a lot more information to plan around after your surgery. We are thinking about you and hoping that all goes well today. Stay hopeful! Kim