Scared - Very Thickened Uterine Wall

BoatinGirl
BoatinGirl Member Posts: 99
edited February 2018 in Hormonal Therapy - Before, During, and After

Hi - was on Tamoxifen for 2.5 years, and then Arimidex for 1 year, and vaginal bleeding took me to the doc, to find out that my uterine wall is 28mm, versus the norm of 5mm or less.

My doc warned me that my gyno will want to do a D&C, and that there will be a pathology report to determine if there is cancer. She mentioned that a hysterectomy would then likely be recommended.

My question is does anyone have a uterine lining that thick and not have cancer :0( And what is the likely culprit, the Tamoxifen or the Arimidex?

Regardless, not taking the Arimidex.

Thanks in advance for any replies. Not really telling my family, until I know what I am dealing with, so it is helpful to come here. That is really one of the worst things about BC - what it does to your family.


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  • ksusan
    ksusan Member Posts: 4,505
    edited May 2017

    Yes, it's a scary thing. How was the measurement obtained, ultrasound? Other scan? Ultrasound isn't very accurate for this. Do you have any fibroids? Fibroids distort uterine ultrasound imaging.

    I wish you the best of luck.

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  • wrenn
    wrenn Member Posts: 2,707
    edited May 2017

    Hi Boatingirl, I have had 4 D&Cs in the last few years because of a thickened endometrium ( I remember it being 15mm the first time and can't remember the others) and was always asked if I was on tamoxifen (which I wasn't and never have been). My results are always negative for cancer and the last time I had bleeding I ignored it because I was tired of D&Cs and the bleeding stopped. My sister also has thickened lining periodically so I am not sure what it is from.

    It is a pain to have to go through the procedure and the worry but you might as well get it done to ease your mind. Hoping for the best for you.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2017

    Boatin- Many many sisters have the thickening from Tamoxifen. When I went to gyn in Jan mine was 3.5 cm. I was also having slight bleeding which a uterine biopsy determined was a benign polyp. She recommended a polypectomy. Instead I asked for a hysterectomy. She whole heartedly agreed. We were seeing each other waaay too often. Chances are very good this is not cancer for you. Tamoxifen increases your risk from 1 per thousand to 2 per thousand. It is a total pain, though. Hang in there.

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  • BoatinGirl
    BoatinGirl Member Posts: 99
    edited May 2017

    Thanks so much for the quick replies! Did a transvag and there was no polyps or anything. Just the thickening. I hope you are right about it not being cancer. But certainly looks like a hysterectomy is in my future.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2017

    In hindsight I should have done it years ago. My hyster was a total open hyster. I was in hospital one night, which was rough, but after that it was all downhill. I was on Tylenol by day three.

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  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited May 2017

    Did a tvh (vaginal hysterectomy) and oopherectomy in January prior to starting Tamoxifen. I never needed pain meds, just Tylenol and walked 2000 steps the same day. Very simple, easy surgery. I am so glad that I did it and that I could put reproductive issues in the past. I feel amazing.

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  • commander
    commander Member Posts: 10
    edited June 2017

    I'm 15 months post 2x mastectomy and I've been on tamoxifen for one year and recently started to experience vaginal bleeding. I'm 56 years old and haven't had a period for 2 and 1/2 years, but my estrogen levels remain high. I'm scheduled for a transvaginal ultrasound this week. I can't help but worry. It feels like this will never end

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  • commander
    commander Member Posts: 10
    edited June 2017

    MY tvu showed uterus thickened to 29 mm and multiple fibroids. Gyn attempted biopsy in office, but I have scar tissue from previous cervical cancer, and a "stenotic cervix" so she was not able to get in (ouch!!). I had a hysteroscopy and d & c three days ago under general anaesthesia. Gyn scraped lining and removed a large fibrous polyp. I'm still waiting for pathology. Onc is testing blood estrogen to see if she recommends continued tamoxifen or switch to AI (I'm 56). If path is bad, uterus and ovaries will go. If path is clear and estrogen still high, onc may recommend Lupron to put me into full-on menopause and switch to AI.

    Does anyone have any experience with Lupron?


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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    Like Farmer Lucy & Michelle - the hysterectomy was the best thing that ever happened in my life. I wish I'd done it years sooner too. If you're through with your family, I'd recommend that over Lupron. Maybe they can even save the ovaries & just take the uterus.

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  • maryny16
    maryny16 Member Posts: 19
    edited January 2018

    Hi

    Just found this thread as I have a very thick (21cm) uterine lining after 6 months on tamoxifen and going off Lupron/Arimidex ( I am pre-menopausal) --- going in for D & C tomorrow. Did anyone have cancerous results from their biopsies ? Obviously worried!

    Thank you for any advice.

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  • Dennyj
    Dennyj Member Posts: 106
    edited January 2018

    maryny16 - I am following this thread because I have the same problem. Hang in there, I don’t have much to say because I just found out a couple of days ago.

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  • Jelson
    Jelson Member Posts: 1,535
    edited January 2018

    was on tamoxifen for 4.5years - starting at age 59. regular tvus which showed thickening and when it got to 11mm, had d&cs, then didn't get a tvus for 18 months (dr. had changed practices where I don't think they agreed with the routine monitoring by tvus - which are in fact, not standard practice) and then I began to spot brown, thought nothing of it, then pink so had an appt, got a tvus which showed a polyp, which was removed via a d&c, tested positive for endometrial cancer, had a robotic da vinci vaginal complete hysterectomy, overnight stay - doing great. was staged at T1a, no treatment other than the hysterectomy - was discharged from the onco-gyno practice after 3 years to be followed with an annual pelvic exam by a regular gyno. The gyno who did the d&c suggested I stop tamoxifen when he gave me the news that I had endometrial cancer. MY mo who follows me for bc did not put me on an AI to finish up my 5 years. what did I learn? most of the endometrial cancer associated with tamoxifen is found in post menopausal women. AIs are not associated with endometrial cancer, I should have made sure that the gyno who did the d&c was communicating with my mo, he was not and I think I should have been ordered to stop the tamoxifen at least a month before I was, endometrial cancer does not have a support system like we have here at bco, that is for sure. made me cherish this website even more than I had before.


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  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited February 2018

    maryny16 and Dennyj

    How did your results turn out? I had my endometrial biopsy yesterday and I am having a hard time envisioning anything but bad results.

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  • 70charger
    70charger Member Posts: 963
    edited February 2018

    also went thru this scare, my results were negative. Fingers crossed for you.

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  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited February 2018

    Thank you, 70charger! I'll still be waiting for awhile and now my anxiety is rising. Glad to hear that your results were negative!

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  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited February 2018

    I got some good news today. The endometrial biopsy was benign, but showed endometritis (inflammation possibly from infection) and so antibiotics it is. Strange that I don't have any symptoms. I don't yet have any insight into the rapidly growing fibroid situation, but I'm cautiously optimistic.

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  • comingtoterms
    comingtoterms Member Posts: 421
    edited February 2018

    I'm hoping others will hop on to let us know their outcomes. I'm 9 years out from diagnosis and almost two years postmenopausal. Suddenly had PMS-like symptoms: sore breast (the only one I have), lower back pain, pelvic heaviness and cramping. Doc did a biopsy in office and sent me for a transvaginal ultrasound which shows a 9.9 mm thickened lining. Waiting on the results of the biopsy. I only lasted for 4 months on Tamoxifen as it was causing hemmoraging, and that was in 2010. Very scary.

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  • Rjmjt120
    Rjmjt120 Member Posts: 34
    edited February 2018

    I am scheduled for one on the 27th. Can you tell me how bad it hurts? Thanks

    Good luck

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  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited February 2018

    rjmjt, I have a high tolerance for pain and the procedure was fairly easy for me, but it must have been harder than I thought. I was exhausted for two days. That surprised me! Maybe it was the stress. A friend of mine had two endometrial biopsies and she said one was like nothing and the other excruciating. No way to predict.

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  • Rjmjt120
    Rjmjt120 Member Posts: 34
    edited February 2018

    thank you pi-xi :

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  • comingtoterms
    comingtoterms Member Posts: 421
    edited February 2018

    My 4 children were born via c-section, so dilating my cervix was unpleasant! Also, I didn’t know I was having the procedure ahead of time,so I didn’t take ibuprofen for the pain. It wasn’t awful though.

    I got the results, which basically indicated that I need a D&C and hysto sonogram anyway!

    Best surprise? Got my period today. Almost 2 years out of menopause!

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  • comingtoterms
    comingtoterms Member Posts: 421
    edited February 2018

    My 4 children were born via c-section, so having my cervix dilated was unpleasant. Also, I didn't know I was having the procedure ahead of time, so I wasn’t able to take anything for the pain. It reallywasn't awful though.

    I got the results, which basically indicated that I need a D&C and hysto sonogram anyway!

    Best surprise? Got my period today. Almost 2 years out of menopause!

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  • Dennyj
    Dennyj Member Posts: 106
    edited February 2018

    I have had the same problem. After an ultrasound, 2 transvaginal ultrasounds, a sonohystogram, an endometrial biopsy (that hurt)...I am now scheduled for a D&C with a Hysteroscopy on Monday because of the thickening of the uterine lining. I am kind of nervous.

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  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited February 2018

    Dennyj, may I ask what your endometrial biopsy showed? It's all very stressful.

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