Tamoxifen and Thickened Uterine Lining
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@TripleAPositive - do you know the name of the test? I know back when I started chemo it was OncoType, but I think others have come to market. I think there are several predictive analysis tools that give you numbers based on your diagnosis. Your doctor may be able to do that for you - mine gave me a chart.
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Sammy3, When I had my D&C they used a slender rod to dilate my cervix. I received a light general anesthetic and had a Hysteroscopy, biopsies, and D&C done. My GYN was able to remove a large old fibroid that the tamoxifen fed. The procedure didn't take long and I really didn't have any recovery issues. Just make sure you don't lift anything 10 pounds or over for 2-weeks because that will cause bleeding. Good luck to you!
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I just had an MRI for my pancreas and cystic foci suggestive of endometrial hyperplasia showed up. I’ve already had 3 uterine biopsies for thickening, spotting, etc over the last several years. I’m really tired of biopsies. I’m wondering if a hysteroscopy is needed to actually cut out the things they see. That swishing around of the biopsy tube seems kind of random to me. Does anyone know what’s better? I’m also considering just having a hysterectomy
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Hi, Yes. After 3 months of 20mg Tamoxifen I had a very thickened uterine lining and 3 very large cysts. The cysts were creating a lot of estrogen. My GYN wanted to do a biopsy but I knew all the changes were from Tamoxifen, as I happened to have a previous pelvic ultrasound. I definitely refused the biopsy and very much didn't want to get sucked down the constant biopsy route. I cut my dose in half to see if the lining and cysts would thin / shrink. After 5 weeks and a retest, the lining was half of what it was and the cysts were nearly gone. I was very glad I didn't have the biopsy. Since Tamoxifen alone was so stimulating for my uterine lining and ovaries, I added Zoladex (ovarian suppression). My doctors had wanted me to add it anyway. After 3 months on Zoladex, the lining is much thinner and no cysts.
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Hi - the test triple a was asking about is the BCI aka the Breast Cancer Indicator. It can be given anytime but my MO said we would wait til I was nearing the end of five years of treatment.
My question is- has anyone heard of someone having a endometrial ablation to treat this thickened lining issue we all have? It’s not the same as a D&C as it actually cauterizes the inside of the uterus. Thoughts?
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Hey all. I went in for my D&C today, but yet again they couldn't complete it. My cervix is apparently scarred & that has been the problem. Everyone keeps asking me if I had LEEP or other gyn procedures, but I have not. So what the heck is causing the scarring? Chemo? Tamoxifen?
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Good to read of all your experiences with Tamoxifen and the thickened lining. I am 67 and back in January 2019 had normal thickness of 4.7 mm, then started Tamoxifen in September of 2019 and began soon having pelvic pain like a "period" and had another ultrasound in November 2019 which showed a 7mm lining which my gynecologist said was fine. Continued to complain about the "cramps" and just had an ultrasound in March 2020 about a week ago and the lining is 11 mm. They did a biopsy but were unable to get enough lining to analyze. So now a possible D&C is to be scheduled. Someone here asked if Tamoxifen can cause a thickened lining (yes most studies show it does). Also I read that it is possible for it to decrease when you stop Tamoxifen. Has anyone "waited" after stopping tamoxifen to see if it does and how long does that take? Weeks, months?
Wheatfields
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wheatfields, After finding out my lining had thickened last June I had decreased my dose to 10mg. At the time of the ultrasound I had 4 small fibroids/polyps and 2 more that had calcified. When I had the D&C last August a large fibroid/polyp was removed this fibroid gave a false reading on how thick my lining was. I continued with the 10mg dose knowing that the tamoxifen fed the fibroid. My Mo wasn't concerned because I didn't have any side effects like bleeding. I decided to have a total hysterectomy which I had on Feb 10th. I had stopped the Tamoxifen for 6 weeks prior to surgery. I just read the procedure report. The surgeon had some difficulty removing my uterus because it was so enlarged and filled with multiple fibroids. (the largest was 3cm) My cervix was also enlarged. My symptoms might be different from those who aren't postmenopausal. I don't feel that pelvic pain/fullness/cramping should be ignored in our age group. Good luck to you!
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Hello ,
I started tamoxifen July 2019 and take 20mg for DCIS . My ER positive number was very high and the doctors really want me to continue taking the tamoxifen. I have gone for a pelvic sonogram and was told I need a D&C but with the Covid 19 virus my date for the D&C was moved from March 20 to May 1 . My periods are not regular and are either very heavy or light or very late or early and I am not menopausal yet. I am hopeful that the D&C will help with my periods but also know that now I have a Cyst on my right ovary that I am sure I didnt have before the medication. The Cyst is being watched for any cancer but so far and Thank God it is negative for any signs of cancer! Anyone know the recovery time on a D&C doctor said about a weekend and then you should be ok to continue daily activities .
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DVCMom3, After my D&C I wasn't allowed to vacuum or lift anything over 10LBS for 2 weeks. I felt so good I did vacuum week 2 and because of that I had some bleeding. I really didn't have the cramping or much discomfort after the procedure.
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Well since the virus has struck I have been told that maybe the D & C will be done in June but both days are not good for me as we are still up in the air about returning to work and having activities for our graduating class. I was told there are no other days as of yet and since its not an emergency I can wait. How long does one think you can wait for? I am guessing this can go on all summer and then have the surgery in September ? I am worried as Now I have no bleeding at all this month and when speaking to the nurse she says this is normal since I am on Tamoxifen.
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My situation may be different because I am postmenopausal but my lining did increase from 4.7 mm to 11 mm on Tamoxifen in about 6 months. The biopsy was inconclusive on March 13 for they couldn't get endometrial tissue but just got cervical tissue which looked benign. So I was referred to another gynecologist for a D and C, but was told to stop Tamoxifen on March 19th. From reading here, I'm getting the impression that just stopping Tamoxifen could reduce the lining and discomfort. I don't have bleeding at all but then that's a postmenopausal thing, or should be. I go just for an initial appointment to this new gynecologist Thursday, to see if a D and C is recommended. And like you I suspect it won't be "right away"
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Another thought I had is to take one of those days in June for the D and C, for what is happening is because of the virus things are getting pushed back in order. And so that way you will have your foot in the door for a June appointment. And work and graduation may be pushed ahead too for that matter. Please do take care of yourself and remember your health comes first.
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Talking to my Dr on Thursday about maybe lowering the Tamoxifen or stopping it till I am done with the D & C . The GYN called again and said now maybe July since its an elective procedure. I am also suppose to go for another sonogram later in the month but have still yet to hear if they are doing these test at our center. This virus is making everything a mess !
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hi, haven't even started tamoxifen yet, but this topic caught my eye. I have ADH and breast surgeon referred me to a medical oncologist which I'm assuming prescribes the tamoxifen? I've been doing a lot of thinking and research on the med. I'm 46 and still have periods-they have been a little wacky the past few years. Before my breast issues, I had a pelvic ultrasound due to irregular bleeding. They found a fibroid (have had two in the past as well). My Gyn just mentioned watching it. I noted my endometrial lining says 11mm. She never mentioned anything about it to me. Now that I'm considering tamoxifen do you think this is an issue?
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Hi Mimi820, Endometrial lining of 4 to 5 mm could be a sign of hyperplasia. If your Gyn diagnosed you with hyperplasia they don't recommend you take Tamoxifen. One side effect is a thickening of the lining and an increase in fibroids/polyps. I would ask your Gyn what she thinks about it. The MO will just say this is a side effect of Tamoxifen and not to worry unless you have bleeding. Possibly there is another alternative you can take to prevent BC.
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thanks! I have a call in to my Gyn. She never mentioned anything about the thickness to me in the past-she kinda acted like the fibroid they found could’ve caused the bleeding. I had no other testing or procedure other than ultrasound.I really am interested to see what she has to say. Thanks again for the info:)
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Hi! Flashlight is right, my MO just said to watch for bleeding that my 11mm lining is just a side effect of tamoxifen. Also, I went to a oncologist gynecologist who did a biopsy of the lining and everything came back fine. I am postmenopausal but with no bleeding, however fibroids, I know from a friends experience can cause bleeding. The oncologist gynecologist said not to worry about the thickened lining. I was a asking if I had 4 more years left of tamoxifen wouldn't that mean at this rate the lining would be like 48 mm thick and he said, oh no it wouldn't grow that much. However, because tamoxifen kept giving me menstrual like cramps almost every day, the MO allowed me to switch to Arimidex along with Boniva once a month for bone density.
Wishing you the very best without any side effects!
Wheatfields0 -
Wheatfields, why is bleeding a problem? I have had some pelvic pain, but my ultrasounds were okay. However, Friday I started bleeding. I haven’t had a period since chemo. 3 years ago. I thought I was in menopause. Maybe it’s my period or maybe not. The bleeding is heavier than my periods were.
Bird
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The "watch for bleeding" I believe applies to post menopausal women who don't ordinarily have bleeding anymore and are on Tamoxifen. Tamoxifen can rarely cause uterine cancer and one of the first signs they say is spotting, however, bleeding can be cause by other things like fibroids, polyps, etc. Do you have a "nurse navigator" who you could call and just ask if you should be concerned. Or a call to the medical oncologist's nurse. Take care!0
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I will call my oncologist nurse when they open. My labs for three years have shown me in menopause, but heavy bleeding since Friday.
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For the record, I started chemo in January of 2018 at age 51 and that knocked me from having normal periods into menopause. After chemo I took tamoxifen for 6 months, then had abnormal bleeding. Spotting not heavy bleeding. Gynecologist said my uterus was very thick, 12mm I think? And a possible small cyst and tiny fibroid. My uterine biopsy showed no abnormal cells. I switched to Arimidex and 6 months later had some spotting again.
The good news is after 6 months on AI and off tamoxifen ultrasound showed the lining went back to a normal thickness, I think 3 or 4mm? Can't remember exactly but in normal range. However the bleeding was unexplained so I am getting all the stuff taken out (hysterectomy) so I don't have to keep getting checked. I hope that's how it works anyway.
The doctor also said that he has seen the uterine lining thickening with tamoxifen many times before and so far he's always gotten a negative uterine biopsy - that was comforting.
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Caiti, thank you for sharing. I am no longer bleeding and see an OB on the 15th. Crossing my fingers for good news.
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Bird of light,
That's great, no longer bleeding, an answer to prayer. Thank you for letting us know
Wheatfields
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Thanks for praying
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Bird of light,
How did the appointment go on the 15th? Take care and be safe.
Wheatfields
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Hello again
Just an update ..Finally got my D & C done two days ago and I am feeling ok so far !
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That's great that you did get in and are feeling okay! Are you still taking the 20 mg of Tamoxifen then? Take care!
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Yes still on Tamoxifen 20 mg . Both doctors agree its best to stay on that this happens often to women on Tamoxifen. My ER positive numbers were high and they want to make sure my scans stay clean like they are now ! Everyday gets better with the healing its almost a week now and going back to the Dr on Thursday for two week check up. Just want to get something back to normal in life between the DCIS and treatments and more Drs for other issues ( autoimmune issues) and then COVID and working from home its all overwhelming and finally having the D & C was a good thing.
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hi bird of light, how you are doing? Please let us know about your results related to bleeding
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