Endometrial thickness on Tamoxifen

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button2
button2 Member Posts: 421

I have a meeting with my oncologist in about 10 days and I have a question. I have been on Tamoxifen since Nov 2012 and I get endometrial ultrasounds every 6 months. I got one this December and the thickness is now 8mm. This is up from 7mm in June. It seems to be increasing a lot every time. Of course I will be asking lots of questions at my appointment, but I am wondering if anyone has had to stop Tamoxifen or get a biopsy due to this problem. My ob/gyn didn't seem concerned, but some sites I read are saying 8mm is the cut off point. I really am afraid to stop Tamoxifen annoying as it is. I also read that some oncs don't have their patients screened at all for gynecological cancers (except for Pap test everyone does of course). I hope everyone had a good Christmas and good luck for the new year to you all....Anna

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  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
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    It's really good that you're

    It's really good that you're being looked at for this.  Or at least I think it is.   I don't know if being 8 mm is a concern (you must be young and premenopausal, and the numbers may vary between being pre and post menopausal), but I do know that uterine/endometrial cancer is a know side effect from Tamoxifen.  I had endometrial cancer, but it wasn't from Tamoxifen.  Just had it.  At the same time as breast cancer.  The good news is that it can often be cured (and they do use the word cured) by surgery alone (hysterectomy) if early stage, low grade.  It does need to be caught in time, of course.  There are two types of uterine cancer (Type 1 endometroid adenocarcinoma, and Type 2 which includes, UPSC, MMMT or carcinoscarcoma, clear cell, and maybe another one).  75% of endometrial cancers are Type 1.  Type 2s are very aggressive and there is no way to know what kind it is without looking at the cells.  A biopsy does not reveal the whole story because it's only the cells they collect.  Sometimes a D & C will be performed which is more definitive, but even that is not the whole story.  Be sure to bring this up when you see your oncologist and ask her/him to explain to you whether you should be worried or not.  And then let us know what you learn.  Different specialists often have different perspectives. 

    I hope you have nothing to worry about and will continue on your course of Tamoxifen without anything getting in the way.

    Suzanne

  • button2
    button2 Member Posts: 421
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    Thanks Suzanne

    I did not know any of that information. It was all very interesting and I will let you know how it goes. I'm so glad you were cured of your endometrial cancer. I certainly do wish to stay on Tamoxifen as long as I can. Thanks again, Anna

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
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    I too had the same test every

    I too had the same test every 3mths but never heard the size/ measurements-but I did end up having a total hysterctomy after 4 1/2 yrs on tamofin and finished up the last 6mths post surgery. (I have now been off the tamoxifen for 18mths)

     

    Denise

  • button2
    button2 Member Posts: 421
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    I too had the same test every

    I too had the same test every 3mths but never heard the size/ measurements-but I did end up having a total hysterctomy after 4 1/2 yrs on tamofin and finished up the last 6mths post surgery. (I have now been off the tamoxifen for 18mths)

     

    Denise

    May I ask why you stopped the

    May I ask why you stopped the tamoxifen? Does getting a hysterectomy solve the estrogen problem for good? Was the surgery difficult? Sometimes I think I should get one too! One last question, did you have any problems stopping the drug, weight gain, periods etc? Thank you Denise and happy new year!

  • New Flower
    New Flower Member Posts: 4,294
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    button2 said:

    May I ask why you stopped the

    May I ask why you stopped the tamoxifen? Does getting a hysterectomy solve the estrogen problem for good? Was the surgery difficult? Sometimes I think I should get one too! One last question, did you have any problems stopping the drug, weight gain, periods etc? Thank you Denise and happy new year!

    thickness

    Hello Ann,

     I was on Tamoxifen for 3 years. I have had 2 biopcies, they both came negatiive. My gynecologist never was very concerned, however when was around 10 mm, he has to do it. he called it tamozifen fluke or effect. It is slowly have become normal after i stopped. The major rule is to call and see your doctor as soon as possible as you have bleeding or spotting. This very critical even if you think you have a period you should call and talk to your doctor or nurse.

     I hope it will work for you for a very long time

    Happy and healthy new year to you

  • button2
    button2 Member Posts: 421
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    thickness

    Hello Ann,

     I was on Tamoxifen for 3 years. I have had 2 biopcies, they both came negatiive. My gynecologist never was very concerned, however when was around 10 mm, he has to do it. he called it tamozifen fluke or effect. It is slowly have become normal after i stopped. The major rule is to call and see your doctor as soon as possible as you have bleeding or spotting. This very critical even if you think you have a period you should call and talk to your doctor or nurse.

     I hope it will work for you for a very long time

    Happy and healthy new year to you

    Thank you New Flower. I will

    Thank you New Flower. I will remember that about the spotting. It is so helpful to get advice from fellow patients before I talk to my onco. A very wonderful 2015 to you too!

    Hugs, Anna

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
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    button2 said:

    May I ask why you stopped the

    May I ask why you stopped the tamoxifen? Does getting a hysterectomy solve the estrogen problem for good? Was the surgery difficult? Sometimes I think I should get one too! One last question, did you have any problems stopping the drug, weight gain, periods etc? Thank you Denise and happy new year!

    Nope. You still make estrogen

    or estradiol in your fat cells.  And BC that is ER+ likes it.  That's one reason being overweight is a risk factor.  If you have a hysterectomy for uterine cancer, they remove everything - ovaries, tubes, cervix because that's the only way to know if it's anywhere else, and sometimes it is.  They also sometimes remove lymph nodes and do a pelvic wash (I had that).  But your ovaries are gone and don't make estrogen.  And this is why aromotase inhibitors are used in post menopausal women.  They supposedly prohibit that conversion to estradiol to feed ER+ cells.  Unfortunately, they also cause osteoporosis quite often.  Tamoxifen blocks the hormone receptors on ER+ cells, AIs prohibit the production of estradiol.  They don't work by blocking receptors if you're still making estrogen (i.e., have working ovaries).  But Tamoxifen can work if you're post menopausal by blocking those receptors from getting estradiol.  AIs supposedly work better in post menopausal women, but I'm on Tamoxifen.

    Both my breast cancer and endometrial cancer were fueled by estrogen.  I had been post menopausal for 5 years at time of diagnosis. 

    Suzanne

  • carkris
    carkris Member Posts: 4,553 Member
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    Nope. You still make estrogen

    or estradiol in your fat cells.  And BC that is ER+ likes it.  That's one reason being overweight is a risk factor.  If you have a hysterectomy for uterine cancer, they remove everything - ovaries, tubes, cervix because that's the only way to know if it's anywhere else, and sometimes it is.  They also sometimes remove lymph nodes and do a pelvic wash (I had that).  But your ovaries are gone and don't make estrogen.  And this is why aromotase inhibitors are used in post menopausal women.  They supposedly prohibit that conversion to estradiol to feed ER+ cells.  Unfortunately, they also cause osteoporosis quite often.  Tamoxifen blocks the hormone receptors on ER+ cells, AIs prohibit the production of estradiol.  They don't work by blocking receptors if you're still making estrogen (i.e., have working ovaries).  But Tamoxifen can work if you're post menopausal by blocking those receptors from getting estradiol.  AIs supposedly work better in post menopausal women, but I'm on Tamoxifen.

    Both my breast cancer and endometrial cancer were fueled by estrogen.  I had been post menopausal for 5 years at time of diagnosis. 

    Suzanne

    I had a d/c in may because I

    I had a d/c in may because I started to bleed. It was from a polyp in my uterus form tamoxifen. my lining had thickened but my biopsies were negative. Funny how you should keep your weight down but the treatments and meds make it so difficult

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
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    button2 said:

    May I ask why you stopped the

    May I ask why you stopped the tamoxifen? Does getting a hysterectomy solve the estrogen problem for good? Was the surgery difficult? Sometimes I think I should get one too! One last question, did you have any problems stopping the drug, weight gain, periods etc? Thank you Denise and happy new year!

    button-who me...disneyfan

    button-who me...disneyfan -why did I stop the med?

     

    if so I finished up my 5 yrs..my hystectomy was about 4 1/2 yrs into taking it..now off 18 mths

     

    Denise

  • button2
    button2 Member Posts: 421
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    Thanks everyone

    Just an update - the oncologist said I should not worry about 8mm. Even up to 10mm would be ok as I've been on the tamoxifen since 2012. So I just keep doing endometrial ultrasounds every 6 months. Tamoxifen is a life saving drug and I try to be happy about taking it - but yes Carkris so annoying about the weight gain!