Taking Tamoxifen...uterine lining thickening

lauren08
lauren08 Member Posts: 29
edited March 2014 in Breast Cancer #1
I started tamoxifen 9 months ago after 6wks of rads & 3 surgeries for DCIS...my periods stopped immediately..within 3 months needed a pelvic ultrasound/vaginal probe which showed multiple cystic areas so I had an endometrial biopsy which came back normal however my gyn put me on a 10day cycle of progesterone to bring on my period which I got 10 days later...that was 4 months ago & haven't had another since. I was having pelvic pain last month & went for another pelvic ultrasound & was told the lining of my uterus has thickened more. My oncologist advised that I don't take anymore progesterone while taking tamoxifen so my gyn feels my only option is a D&C to clear out the lining..she said if it continues to thicken I will have uterine cancer. I am so fearful of this b/c I know it is a side effect of taking tamoxifen. I never wanted to take tamoxifen from the get go b/c of my family history of blood clots,heart attack but after a few months I decided to give it a try. Now I feel that I'm having all these problems & needed multiple ultrasounds, biopsy & now another procedure. I'm so frustrated with the whole thing. Has anyone else been through a similar experience?? Will be glad to hear your thoughts. I find that people who haven't had breast cancer can't relate or understand the anxiety & fear that you have to live with afterwards.

Comments

  • Megan M
    Megan M Member Posts: 3,000
    #2
    I can understand how scared
    I can understand how scared you are. I would be too. I am not on tamox, so, I can't relate totally to what you are going through. But, after going through bc, the thought of another cancer would scare me too.

    I wish you good luck and I know others will post that know more than me.


    Hugs, Megan
  • New Flower
    New Flower Member Posts: 4,294 Member
    #3
    Yes, I had similar experience
    my gynecologist also oncologist, so he felt pretty comfortable with monitoring my lining. He called thickness of lining Tamoxifen effect. I have had vaginal ultrasound every 3 months, but it did not bother me. I was on Tamoxifen for 15 months. My next app in September but I switched to Arimidex 2 month ago. Chemo put me in induced menopause and nobody suggested to reverse it. Get a second opinion with GY/oncologist.
    Good luck
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #4
    New Flower said:

    Yes, I had similar experience
    my gynecologist also oncologist, so he felt pretty comfortable with monitoring my lining. He called thickness of lining Tamoxifen effect. I have had vaginal ultrasound every 3 months, but it did not bother me. I was on Tamoxifen for 15 months. My next app in September but I switched to Arimidex 2 month ago. Chemo put me in induced menopause and nobody suggested to reverse it. Get a second opinion with GY/oncologist.
    Good luck

    I agree with New Flower.
    I agree with New Flower. Perhaps you should seek a 2nd opinion. Good luck!


    Jan
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #5
    survivorbc09 said:

    I agree with New Flower.
    I agree with New Flower. Perhaps you should seek a 2nd opinion. Good luck!


    Jan

    Lauren, why are you taking
    Lauren, why are you taking progesterone? Isn't that for hormone replacement therapy? If you are ER and PR+, you shouldn't be taking that, should you? Or, am I just all confused here.

    So sorry for what is happening to you now. As many know on here, I haven't taken tamox yet as I fear the side effects more.


    Wishing you good luck always!


    Sue :)
  • elm3544
    elm3544 Member Posts: 748
    #6
    Yes
    I have had problems in this area even before the BC, and have had pelvic ultrasounds for a few years. I recently had a uterine biopsy due to the increased thickening and bleeding. It came up normal. I will be going to see my GYN tomorrow to discuss and scedule a full hysterectomy. She and I agreed its better for me to take this preventive measure due to my history. I have only been on Tamoxifen since December 1.
  • cahjah75
    cahjah75 Member Posts: 2,631
    #7
    I'm still in treatment
    so I don't know yet whether I'll be put on Tamoxifen or Arimidex. The week after I was dx with bc I started spotting. Mind you I'm 11 years post menopause and had never had any bleeding in more than 12 years. So my gyn did an endometrial biopsy and I also had an ovarian ultrasound. Everything came back normal but I'm sure my gyn will be extra vigilant in monitoring me after treatment is done.

    I have one sister who took Tamoxifen for 5 years and she has had one polyp removed. She also has had several colonoscopy polyps removed.
    Char
  • lauren08
    lauren08 Member Posts: 29
    #8
    Ritzy said:

    Lauren, why are you taking
    Lauren, why are you taking progesterone? Isn't that for hormone replacement therapy? If you are ER and PR+, you shouldn't be taking that, should you? Or, am I just all confused here.

    So sorry for what is happening to you now. As many know on here, I haven't taken tamox yet as I fear the side effects more.


    Wishing you good luck always!


    Sue :)

    Thanks Ritzy, I only took
    Thanks Ritzy, I only took the progesterone for 10 days back in March to bring on my period since the lining was thickening. It came in April but that was the last one I had. My oncologist doesn't think it is safe to take it again so now the gyn wants to do the D&C to clear out the lining.
  • lauren08
    lauren08 Member Posts: 29
    #9
    Megan M said:

    I can understand how scared
    I can understand how scared you are. I would be too. I am not on tamox, so, I can't relate totally to what you are going through. But, after going through bc, the thought of another cancer would scare me too.

    I wish you good luck and I know others will post that know more than me.


    Hugs, Megan

    Thanks Megan!

    Thanks Megan!
  • lauren08
    lauren08 Member Posts: 29
    #10
    New Flower said:

    Yes, I had similar experience
    my gynecologist also oncologist, so he felt pretty comfortable with monitoring my lining. He called thickness of lining Tamoxifen effect. I have had vaginal ultrasound every 3 months, but it did not bother me. I was on Tamoxifen for 15 months. My next app in September but I switched to Arimidex 2 month ago. Chemo put me in induced menopause and nobody suggested to reverse it. Get a second opinion with GY/oncologist.
    Good luck

    Hi New Flower.. since I
    Hi New Flower.. since I hadn't gone through menopause yet the only drug is tamoxifen.now I believe the Arimidex or Evista are the options. Thanks!
  • lauren08
    lauren08 Member Posts: 29
    #11
    elm3544 said:

    Yes
    I have had problems in this area even before the BC, and have had pelvic ultrasounds for a few years. I recently had a uterine biopsy due to the increased thickening and bleeding. It came up normal. I will be going to see my GYN tomorrow to discuss and scedule a full hysterectomy. She and I agreed its better for me to take this preventive measure due to my history. I have only been on Tamoxifen since December 1.

    Hi elm..I started the
    Hi elm..I started the tamoxifen 1 day before you did. So glad your biopsy came up normal. Good Luck with scheduling your hysterectomy. A friend of mine at work had one & she told me it was the best decision she made & has no regrets..she had severe bleeding for months & months & her Dr. told her a D&C was like a band-aid & the hysterctomy was the best thing.Keep me posted.
  • lauren08
    lauren08 Member Posts: 29
    #12
    cahjah75 said:

    I'm still in treatment
    so I don't know yet whether I'll be put on Tamoxifen or Arimidex. The week after I was dx with bc I started spotting. Mind you I'm 11 years post menopause and had never had any bleeding in more than 12 years. So my gyn did an endometrial biopsy and I also had an ovarian ultrasound. Everything came back normal but I'm sure my gyn will be extra vigilant in monitoring me after treatment is done.

    I have one sister who took Tamoxifen for 5 years and she has had one polyp removed. She also has had several colonoscopy polyps removed.
    Char

    Cahjah..hope your treatments
    Cahjah..hope your treatments are over soon. Are you having chemo? I just had the 6 wks of rads..I believe tamoxifen is if you are peri-menopausal & once you are post menopausal there are a couple different drugs for you. I heard the side effects are not as bad as the tamoxifen. Good Luck!
  • sal314
    sal314 Member Posts: 599 Member
    #13
    Didn't Have Problems
    with thickening of the lining, but had major cyst issues. Had one ovary removed early on because the cyst was so big and they thought it could be cancer. It wasn't, thank the Lord. My gyne has just kept and eye on the cysts that have developed on the other ovary. My onco. said it's a somewhat common side effect, but won't turn into cancer. So, I've just gotten utlrasounds every 4 or so months to make sure they look ok.

    I'd just say, go with what your gut tells you and heed the advice of your oncologist.

    Blessings,
    Sally
  • sea60
    sea60 Member Posts: 2,613
    #14
    Hi Lauren,
    The tamoxifen affected my uterus as well. I hadn't had a period after my first chemo treatment in 2005. After treatments, rads and surgeries, I was put on tamoxifen in 2007. They switched me to Arimidex which I couldn't tolerate, so, went back to the tamoxifen. December 2008 out of the blue I had a very heavy period. Went to see the GYN who told me the same thing. That my lining had thickened and it showed early signs of uterine cancer. So in 2009, I had a total hysterectomy.

    Like you, I felt very frustrated because my Oncologist wants me on Tamoxifen. I too am frustrated having to take drugs and am so ready to just stop.

    Plus I still have "other" side effects from Tamoxifen.

    I hope all goes well with you. Closely monitor the condition of your uterus.

    Sylvia
  • New Flower
    New Flower Member Posts: 4,294 Member
    #15
    lauren08 said:

    Hi New Flower.. since I
    Hi New Flower.. since I hadn't gone through menopause yet the only drug is tamoxifen.now I believe the Arimidex or Evista are the options. Thanks!

    Hi Lauren
    Ritzy (Sue) is correct. You should not take progesterone anymore. That is why your oncologist against it. Your gynecologist should be familiar with side effects of Tamoxifen and period. Try to consult with gynecologist who specializing in gynecological cancer. Most of gynecological cancer are hormone dependent and your need a doctor who understands hormonal therapy approach.
    Arimidex is used for postmenopausal patients only, for those who are not surgery or Zoladex shot. I decided to have shots instead of ovary removal at this point.
    Good luck,
    New Flower
  • Angie2U
    Angie2U Member Posts: 2,991
    #16
    lauren08 said:

    Cahjah..hope your treatments
    Cahjah..hope your treatments are over soon. Are you having chemo? I just had the 6 wks of rads..I believe tamoxifen is if you are peri-menopausal & once you are post menopausal there are a couple different drugs for you. I heard the side effects are not as bad as the tamoxifen. Good Luck!

    I thought tamox was for pre
    I thought tamox was for pre menopausal women, but, some on here said they take it and I am sure they are beyond that. Is there an age for it?
  • cahjah75
    cahjah75 Member Posts: 2,631
    #17
    Lauren
    I had one sister take Tamoxifen for 5 years and one took Arimidex for 5 years. Neither of them had any side effects that they remember. Both went through menopause during chemo and radiation. I am on chemo treatment right now. Because I have severe degenerative disc disease from osteoarthritis my dr has suggested I may be better off taking Tamoxifen because Arimidex can cause bone loss and I don't need that! We'll see what he suggests when I'm done with treatment. Right now I'm not too concerned.
    Char
  • Marcia527
    Marcia527 Member Posts: 2,729
    #18
    I was on Tamoxifen for 9
    I was on Tamoxifen for 9 months and had spotting. After a blood test the onc determined that I was in menopause. I went to the GYN and she did a biopsy and ultrasound. It was ok. So she did a D&C. It turned out I had polyps. The onc changed my medication to Aromasin just in-case. I know it's irritating to go through all this but hang in there.

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