Uterine Lining thickening on Tamoxifen

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marycal
marycal Member Posts: 61

I am wondering about endometrial thickness. I've been on Tamoxifen for 1 year and a half. For the first 6-8 months I was still getting my period often enough (I'm 48 and pre-meno) that my lining wasn't an issue. But then they stopped and I hadn't had one for about 8-9 months. Then I went to get an ultrasound (I've been getting them every 6 months) and the lining was 14mm. It had been 12mm 6 mos prior. This is way too thick for my liking, however my gyn is still not worried. She is well respected at UCSF and basically only sees women with breast cancer that have had chemo and/or are on hormone therapy. She's been doing this for 20ish years. She's adamant that she's not worried. She explained to me that there is no "normal" thickness for those on Tamoxifen because it causes subendometrial glands to swell and ultrasound cannot tell how thick the glands are vs. how thick the actual lining is. She's mainly worried about irregular bleeding. It still doesn't make me feel better. My next appt with her isn't for 4 mos (it's very difficult to get an appt with her, sadly, she's really busy).

The DAY after the ultrasound, I got a very heavy period. So now I'm a little less worried, but only a little. I am reading some posts here and it seems that many women are getting D&C's and/or hysterectomies because their thickness has reached this level.

My questions: is anyone getting these levels of thickness and doing a watch and wait? What are your gyn's saying about it? How much lining do we actually shed during a period?

Thank you all so much!


Comments

  • Palesa2018
    Palesa2018 Member Posts: 140
    edited December 2018

    Hello Marycal, I only recently started on Tamoxifen but went for baseline measures and was told that the lining should not exceed 5mm. Anything greater we would need to do additional tests. I have not sought to check this with anyone else. My MO and gyn advised as such. My lining was 2mm. This is pre tamoxifen so will see in the next 6 months.

    The information about glands is interesting, I will also ask more about that.


    All the best, Please share any updates.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited January 2019

    While on Tamoxifen, the lining wasn't the issue with me. It was always thicker than expected. My periods stopped about 6 months in. I developed some annoying spotting. The spotting was due to polyps. I did get the polyps removed & they would do a D&C at the same time. After the 1st polyp was removed, I was told to come back in a year. Sure enough I had grown another polyp. Had that one removed. I was told to come back in 6 months. Another polyp had grown. Had it removed.

    At that point I was told to come for US every 6 months. I asked, but don't remember, how often polyps actually become malignant if left alone. I was told a small percentage but that they needed to be removed. From that point forward. I went every 9 months. They found a polyp each time. Had a polypectomy/D&C each time. Until I reached the 5 year mark & I stopped the Tamox.

    It was suggested that I get a hysterectomy by the GYN/rerproductive endocrinologist. I consulted with a urologist. The urologist thought the polypectomy/D&Cs were a better way to go. Less problematic surgery. No real recovery, fine the next day. With a hysterectomy there was a 10% chance of incontinence.

    I had the nicest GYN on the planet but still.....

  • tennispretzel
    tennispretzel Member Posts: 3
    edited January 2019

    Coraleliz, re: polyps. I too had thickening of up to 16mm which I only knew because I had a huge period 16 years after menopause and after 4 years of Tamoxifen. My doctor said 4mm was normal.

    I had a D & C after 6 months of procrastinating and doing a "wait and see" with many US in between. A polyp was found and the doctor said that these do not become malignant ever which is contrary to what you were told. Who knows what to believe? Three uterine biopsies were negative. Six months after the D & C, I had another period although I had stopped the Tamoxifen a year prior to this point. The lining was 12 after being off T that long. I declined another D & C and she offered a saline sonogram three months later which said my lining was "normal". I wait; don't know if this is over.

    Good luck with your situation. I'm sorry you have had to have repeated polyps removed. My advice is not to do anything radical especially if there's a negative biopsy.

  • marycal
    marycal Member Posts: 61
    edited January 2019

    Thank you for the replies. All interesting information. Boy, my doc seems to be a total outlier given that your docs say 5mm or 4mm are the upper range of normal.

    Coraleliz and tennispretzel - how were the polyps seen? By ultrasound?

    Palesa2018 - share any updates that you may have!

    I'll do the same and share any updates, and in the meantime, if anyone else wouldn't mind chiming in with their experiences, I'd really appreciate it!!

  • wallycat
    wallycat Member Posts: 3,227
    edited January 2019

    The thicker the lining and the longer it continues without a period, the more concern there may be in the future. I read 11mm should be the cut off, but there's always updated information and it has been over 8 years since I've been on it. I did end up with 3 polyps (I was on tamox for 3 years and arimidex for 2) a few years after I stopped all antihormonals. Thankfully, mine was b-9. My gyn in WI told me it would be 3% risk of the polyps being cancerous.


    Here is the article: https://www.ncbi.nlm.nih.gov/pubmed/15386607

    As an aside, tamoxifen naturally thickens the lining which is why women are told to get screenings when on it---it acts as estrogen in the uterus.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited January 2019

    I had an ultrasound along with a saline ultrasound each time.

    I saw the GYN 1 year after starting on Tamox. I had an elongated polyp that was protruding thru my cervix. Polypectomy/D&D # 1.

    When I went back after a year, I had grown another polyp (as seen on the US done with saline). Polypectomy/D&C #2.

    At that point, I was told to get the US/saline US done every 6 months but I pushed it to 9 months. Each time they found 1 or 2 polyps. So, I "needed" a polypectomy/D&C each time. I asked about leaving the polyps alone & was told they needed to come out.

    I was told that some women grow polyps on Tamox repeatedly. There is no way I could have tolerated another 5 years on that drug. So, I decided against the 10 year plan.

    A hysterectomy was a choice offered to me. I declined & do not regret that decision.

    I completed 5years on Tamox just over 2 years ago. So I don't go to the GYN anymore

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited January 2019

    Chemo stopped my very regular periods at age 50. About eight months later, I started Tamoxifen. Both my MO and my GYN declined to do any baseline US - stating that there is no guidance for how often they should be done or what cut offs should be used. They only advised me to follow up on any bleeding as that could be concerning.

    I quit taking the Tamoxifen after three months due to too many problems with SE's. A few months later I had an episode of fairly severe abdominal and groin pain. My PCP sent me for an US - thickened lining (1.2 cm) and ovarian cyst. My GYN recommended to repeat US in three months. That one showed lining of 1.6 cm and cyst had become septated! GYN's advice was for D&C with possible ovary removal.

    And then I had a period - 18 months after my last one! Another US done a couple of months later showed a lining of 0.3 cm and no ovarian cysts.

    I have a new GYN. She would like me to be on Tamoxifen - as would my MO. I know that the risk of uterine cancer is very low. And my risk for recurrence is much more concerning. I just really don't feel like dealing with any more problems. I wish there was better guidance on these things.

  • edwards750
    edwards750 Member Posts: 3,761
    edited January 2019

    Tamoxifen isn’t giving you much of a QOL. Don’t let them force that drug on you. I took it for 5 years and had minimal side effects fortunately but I do know of other ladies who suffered debilitating side effects. They quit taking the drug. Some went to another med and offers just quit taking anything. altogether.

    It’s a crap shoot. While it is an extra insurance policy to prevent a recurrence it certainly is no guarantee but nothing with BC is for that matter.

    A lady in our group st church had to have a complete hysterectomy. Her DR told her she was close to having uterine cancer had she not had the surgery.

    BC is not one size, fits all so be diligent in whatever you decide including informing your doctors if you choose not to take it. It’s your life and your call. Just don’t second guess yourself or look back and wonder what if...

    Diane

  • marycal
    marycal Member Posts: 61
    edited January 2019

    Thank you everybody for the information.

    wallycat - it's crazy that you developed polyps years after you stopped the antihormonals. Glad to hear they were benign.

    notverybrave - I'm really happy to see how much your lining went down after that period. I was wondering that for me. I hope mine went down that much. And I agree, I wish there was better guidance. It's tough when so many doctors believe different things. My first gyn didn't want to do a baseline u/s or follow ups for the same reasons. They were actually angry that I asked (which is why I switched). I wish none of us had to deal with these problems. It'd be nice to just move on from treatment and feel somewhat normal.

    I'll report back after my appt with my gyn and my next u/s in case anyone is interested. I sure just wish my period would keep coming (never said that in my life before!).

  • marycal
    marycal Member Posts: 61
    edited January 2019

    Oh and also - most studies seem to be based on postmenopausal women. Even though tamoxifen has basically stopped my periods, my hormone levels still say that I'm pre (peri) menopausal, so that's what I think I am. Should I consider myself post meno in regards to endometrium thickening/uterine cancer risk because my lining is only being shed 1x or less per year? Regardless of my hormone levels? Hope that makes sense.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited January 2019

    Yes - would like to just be done and move on! Conflicting opinions and practices of various physicians make things extra hard. It's like a full time job to figure out what's best.

    Hormone levels fluctuate so it's difficult to rely on them. Premenopausal endometrial thickness varies quite a bit due to hormone influence. Postmenopausal thickness should remain thin. Tamoxifen causes changes that I guess are just not that consistent from woman to woman.

    Personally - I worry less about possible uterine cancer than I do about the effects of a thickened lining, polyps, cysts, etc

  • wallycat
    wallycat Member Posts: 3,227
    edited January 2019

    These days, post meno gals will be put on AIs and pre-meno on tamoxifen, so hopefully some newer studies will be coming out.

    As an aside, my 3 polyps were incidental findings. I was in an ovarian cancer study so CA-125 and trans-vaginal ultrasounds were done. First visit and they spotted the thickening. They thought it was just a thicker lining with one polyp; ended up with 3 polyps and that looked like thickening on the ultrasound. I had zero symptoms. No spotting or bleeding and nothing I could say would have called an alarm to me.

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