hormone therapy

Tamoxifen and menstruation

KayeD Community Member March 20, 2008
  • I need some information.  I'm not understanding the relationship between my estrogen-positive tumor, taking Tamoxifen and my apparent periods.  My doctors (oncologist and gyn) both told me that my ovaries would be basically shut down due to the chemo and then the Tamoxifen.  So, I was figuring that hormones in general were a bad thing for me - no worries, I'm 49 and not interested in any more children.   So, why am I having periods? 

     

    Now, it seems I can't get a straight answer out of anyone!?  Here I thought after 49 years I had the whole scientific estrogen, progesterone, egg, ovary, fallopian tube, uterus thing down pat.   I didn't have any periods at all during chemo and am just now surprised.  My last chemo was 12/27 and my last radiation was 3/3.  I started Tamoxifen later that same week (of 3/3).   I can't get a straight answer out of my doctors now and I'm getting rather ticked off.  This is all new to me.

     

    Anyone have any advice?  I've looked on the internet regarding menstruation during or after breast cancer treatment and it doesn't look like there is any significant info out there.  Or, I'm still so muddle-headed with chemo-brain that I'm not reading correctly.

     

    Thank you ladies,

     

    Kaye

16 Comments
  • PJ Hamel
    Health Guide
    Mar. 20, 2008
    Hi Kaye - I hope Maria's articles have helped. I know many women who continued to have periods while taking tamoxifen. Tamoxifen doesn't stop estrogen production; it just stops estrogen from binding to cancer cells (they need estrogen to grow). And, I also know women who've had chemo, and stopped menstruating, and then after awhile their periods...
    RHMLucky777
    Read More
    Hi Kaye - I hope Maria's articles have helped. I know many women who continued to have periods while taking tamoxifen. Tamoxifen doesn't stop estrogen production; it just stops estrogen from binding to cancer cells (they need estrogen to grow). And, I also know women who've had chemo, and stopped menstruating, and then after awhile their periods came back. Kaye, sounds like you're having a fairly normal reaction, so don't worry, OK? In the meantime, try to keep advocating for yourself; it's tiresome, but it's a good thing to learn how to do. Because YOU, ultimately, are the one who has to ensure that you get the best possible treatment. good luck- PJH
    • KayeD
      Mar. 21, 2008

      PJ:

       

      Your statements as well as Maria's articles are a significant help to me.  I'm the kind of person who wants to be told something, anything, at least telling me what I may or may not expect.   Don't tell me "nothing."   Don't not respond to my questions.  That tends to infuriate me. 

       ...

      RHMLucky777

      Read More

      PJ:

       

      Your statements as well as Maria's articles are a significant help to me.  I'm the kind of person who wants to be told something, anything, at least telling me what I may or may not expect.   Don't tell me "nothing."   Don't not respond to my questions.  That tends to infuriate me. 

       

      I appreciate your help ladies!!!

       

      Kaye

  • Anonymous
    Elisa Everett-S...
    Jul. 01, 2009

    I have to thankyou for the articles myself. I have only been on the tablets for 4 months and have only recently stopped all the treatment, but have woken up to find that i have my period for the first time since beginning the treatment.

     

    Obviously being "shut down" means something else to us than it does to doctors.

     

    Elisa

    • EES
      EES
      Dec. 19, 2010

      Just to give you ladies a 2 yeare update on me, I have to tell you all you ladies, I got made redundant in September 2009  almost 1 year exactly after my diagnosis and decided that I would take time off, since both my children had jobs (I am now only 41 and had kids really young, there adults with lives of there own) and go and contemplate what it was...

      RHMLucky777

      Read More

      Just to give you ladies a 2 yeare update on me, I have to tell you all you ladies, I got made redundant in September 2009  almost 1 year exactly after my diagnosis and decided that I would take time off, since both my children had jobs (I am now only 41 and had kids really young, there adults with lives of there own) and go and contemplate what it was I wanted to do with the rest of my life. I had what is called curative surgery, but as you all know you just never know so I never take one second of my life or day for granted. I don't let anything bug me i take my tamoxifin like its a daily lollipop, as its a constant reminder that I was ill, but in all of this, I left Australia with my redundancy money and took off for 6 months to Europe (oh my god was that the most fun i had since i got divorced). It was the best thing I have ever done for myself. Taken one hell of a selfish moment to do something for myself. In the end I decided as I started to have these irregular disgusting brown/red discharging period things (it was revolting and very heavy) that I was going to go and find a gyno that would do a full hysterectomy. I found the BEST gyno on the planet through my surgeon who was so supportive. Way more supportive than the oncologists ever were/are. Now 10 months after the hysterectomy and 2 years in the the clear, I have to say that I have never felt better. Seriously especially in the last 2 weeks I have been feeling like someone threw fairy dust on me and life just changed. (I better not crash to earth, i am just on a total happy high) My only ridiculous problem is that not because of having no womb, but because i am missing a nipple from my chest I have not and cannot even contemplate having a relationship. This in itself makes me so lonely some days I want to cry, then I realise I am alive, I am actually healthy and to be honest with you all actually HAPPY. I did a stupid thing and made all my friends go away so i eneded up kind of going through this alone, and in the last year have started to rebuild my life with new friends. Most of whom have no clue that I was ever sick. I have my hair grown back (so curly i look like shirley temple) but I am getting so used to it i am starting to love it. My question is now, how do I meet a man and not feel so self concious about my breast that i find a partner. Any help here ladies would just be fantastic. I do not want to my 42nd birthday feeling like a body loser just because of a stupid nipple!

    • Phyllis Johnson
      Health Guide
      Dec. 19, 2010

      Unless you met a man who really wants babies, the loss of your womb should not be a problem at all.  Women who have had breast surgery have different approaches on how they want to share that information in a new romantic relationship.  Some like to mention it very early to "weed out" men who are so shallow that they can't accept someone with scars...

      RHMLucky777

      Read More

      Unless you met a man who really wants babies, the loss of your womb should not be a problem at all.  Women who have had breast surgery have different approaches on how they want to share that information in a new romantic relationship.  Some like to mention it very early to "weed out" men who are so shallow that they can't accept someone with scars and missing parts.  Others want to let the relationship grow before bringing in that information.  Sexuality is about much more than breasts and perfect bodies.  You have plenty of erogenous zones left, and once you find the right man, sex will work just fine.

      I'm so glad to hear that you have taken charge of your life and taken the time to travel and assess.  I'm sure you have a wonderful future ahead of you.

    • MsMary
      Dec. 19, 2010

      Hello EES

      I, too, felt likeyou are feeling now.  I thought that no man would every want me in the condition that I was in.  I found a nice man and the first day that we started talking, I told him what I ahd went through.  He was very understanding, that is one thing you have to make sure of, that he is understanding and we have been friends,...

      RHMLucky777

      Read More

      Hello EES

      I, too, felt likeyou are feeling now.  I thought that no man would every want me in the condition that I was in.  I found a nice man and the first day that we started talking, I told him what I ahd went through.  He was very understanding, that is one thing you have to make sure of, that he is understanding and we have been friends, together since March.  He ask how I am and he thinks about me.  You will find that special one, don't look for it but just wait on it and you will be blessed with that special one.  Good luck and enjoy being happy, you earned it.

      Mary

    • Anonymous
      Anonymous
      May. 11, 2012

      hey dear every things will be fine and give thanks to god he gave you onthere chanes i am same situation you will meet some one if you meet say the truth about your self if he love you he dont mind about brust this days you can fix it new brust womens the just do it for cosmotics for show extara but you have probelame so darling women no worry you will meet...

      RHMLucky777

      Read More

      hey dear every things will be fine and give thanks to god he gave you onthere chanes i am same situation you will meet some one if you meet say the truth about your self if he love you he dont mind about brust this days you can fix it new brust womens the just do it for cosmotics for show extara but you have probelame so darling women no worry you will meet some one keep been happeySmilemy dear women i pass your rood same problems i understand your pain all

    • PJ Hamel
      Health Guide
      May. 11, 2012

      Thank you so much for your kind words here. We're all in this together - and it REALLY helps to receive support from other women... Be well - PJH

  • Anonymous
    Carol
    Apr. 26, 2008

    I am in the same situation as you are. I had surgery for estrogen + tumor in November, finished my chemo 4/6, my radiation 7/7 and have been on Tamoxifen since the end of chemo. I am 43 years old.

     

    The things I have read (despite my muddled-head chemo brain) seem to indicate that any menstruation is a problem, "call your doctor immediately if you have...

    RHMLucky777

    Read More

    I am in the same situation as you are. I had surgery for estrogen + tumor in November, finished my chemo 4/6, my radiation 7/7 and have been on Tamoxifen since the end of chemo. I am 43 years old.

     

    The things I have read (despite my muddled-head chemo brain) seem to indicate that any menstruation is a problem, "call your doctor immediately if you have bloody or brown vaginal discharge" because it can be an indication of endometrial cancer or some thickening of the endometrium. Have you been to your OBGyn? I am having my second period in three months, completely irregular, the first was labled as an anomaly. Now with the second my doctors are paying more attention. All the tests came back negative the first time, so we shall see.

  • Anonymous
    michele
    Apr. 05, 2008

    Hi,

     

    I just started taking Tamoxifen and came across your inquiry. I'm not knowledgeable on the effects of chemo on menstration, but I have done a lot of research on Tamoxifen.

     

    It is my understanding that Tamoxifen does not "shut down" the ovaries. what it does is prevent the estrogen your body naturally produces from connecting the...

    RHMLucky777

    Read More

    Hi,

     

    I just started taking Tamoxifen and came across your inquiry. I'm not knowledgeable on the effects of chemo on menstration, but I have done a lot of research on Tamoxifen.

     

    It is my understanding that Tamoxifen does not "shut down" the ovaries. what it does is prevent the estrogen your body naturally produces from connecting the the estrogen receptors on the cancer cells.

     

    I'm assuming your cancer is estrogen-receptive. There are little "arms" on the cancer cells that look for estrogen. It uses estrogen as its food. Tamoxifen stops this connection and essentially starves the cancerous cells.

     

    You may be having periods because your body is readjusting after all of your treatments and you haven't passed through menopause. Which takes several years to move through. It becomes a bit tricky for those of us who are in menopausal years to separate what is our body's natural response to what is our body's response to the cancer and the cancer's treatments.

     

    Make sure you make regular visits to your gyno since there is a record of increase in uterine cancer from tamoxifen. And I guess, buy some tampons and find your gratitude that your body is doing its thing.

     

     

  • Angi
    Apr. 05, 2008

    I am 34, postmenopausal (surgically removed) diagnosed with breast cancer at same time as hysterectomy - had a double mastectomy since then, been through chemo and take Femara which is supposed to stop all estrogen/progesterone (which I don't understand WHERE I would get any), not quite been 3 years - well during breast reconstruction in Feb. 08 my surgeon...

    RHMLucky777

    Read More

    I am 34, postmenopausal (surgically removed) diagnosed with breast cancer at same time as hysterectomy - had a double mastectomy since then, been through chemo and take Femara which is supposed to stop all estrogen/progesterone (which I don't understand WHERE I would get any), not quite been 3 years - well during breast reconstruction in Feb. 08 my surgeon found scar tissue & removed it only to find out it was cancerous.  This time it didn't test + for progesterone, but it still tested + for estrogen.  I'm still trying to find an oncologist and start treatment, whatever that may be - but still who am I getting estrogen with no ovaries and a drug that blocks it?

     

    oh then to top it off I found an article online that someplace is using Femara to help with infertility and getting pregnant.  WHAT!?!

     

    good luck on your quest for answers!

  • Jolene Boyd
    Mar. 24, 2008

    Kaye,

    I thought it was worth also mentioning that in addition to "allowing" you to have periods if you are pre-menopausal, tamoxifen apparently may make you even more fertile than usual...it is actually used as an infertility treatment sometimes!  Perhaps this is obvious, but since your docs didn't give you the info you were looking for about...

    RHMLucky777

    Read More

    Kaye,

    I thought it was worth also mentioning that in addition to "allowing" you to have periods if you are pre-menopausal, tamoxifen apparently may make you even more fertile than usual...it is actually used as an infertility treatment sometimes!  Perhaps this is obvious, but since your docs didn't give you the info you were looking for about menstruation, I wanted to make sure someone mentioned that you should be SURE to use some form of barrier contraceptives if you are sexually active (and most things I have read say you should use spermicide, too).

  • Maria Gifford
    Mar. 21, 2008

    Kaye,

     

    It's our pleasure to be here for you -- anytime. I'm glad the information I found for you was helpful. Write again soon, we love hearing from you!

     

    Take care,

    Maria

    • Anonymous
      de
      Sep. 07, 2009

      thank you ladies for this info , i was diagnosed with stage1 ER+, i did surgery+radiation now on tamoxifen, my period stops for 7 months and came back suddenly i really got scared thinking it might be uterine cancer since that could be a side effect, i also experienced hot flashes

  • Maria Gifford
    Mar. 20, 2008

    Hi Kaye,

     

    Good question, and I'm sorry you're getting the run-around from your doctors on this. I did find some information. See:

     

    Menstruating After Breast Cancer Treatment

    http://www.cancer.gov/clinicaltrials/results/menstruation0206

     

    Tamoxifen and Menstruation

    http://www.cnn.com/HEALTH/doctor.qa/breast.cancer/tamoxifen/content.html

     ...

    RHMLucky777

    Read More

    Hi Kaye,

     

    Good question, and I'm sorry you're getting the run-around from your doctors on this. I did find some information. See:

     

    Menstruating After Breast Cancer Treatment

    http://www.cancer.gov/clinicaltrials/results/menstruation0206

     

    Tamoxifen and Menstruation

    http://www.cnn.com/HEALTH/doctor.qa/breast.cancer/tamoxifen/content.html

     

    Monitoring the Endometrium of Women on Tamoxifen

    http://www.medscape.com/viewarticle/412541

     

    I'm not sure how helpful these articles will be, but I wanted to share what I found with you. Keep us posted on what comes of this and how you're doing in general.

     

    Best,

    Maria

    • KayeD
      Mar. 21, 2008

      Maria:

       

      I can't thank you enough for these articles!   They have been a significant help.  I think sometimes doctors involved with cancer patients are hesitant to state something because everyone reacts so differently.  Lets face it, we're very emotional and "raw" at that time and if the doctor, who we look to to save...

      RHMLucky777

      Read More

      Maria:

       

      I can't thank you enough for these articles!   They have been a significant help.  I think sometimes doctors involved with cancer patients are hesitant to state something because everyone reacts so differently.  Lets face it, we're very emotional and "raw" at that time and if the doctor, who we look to to save our life, says something and it doesn't happen, we can overreact!  I know I've done that.  I appreciate the sharing of information and friendship this website provides! 

       

      Thank you again!

       

      Kaye