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Topic: Fibroids and tamoxifen

Forum: Hormonal Therapy - Before, During and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Jun 13, 2007 03:56AM

threadbear wrote:

One year ago, I had an ultrasound of my uterus that showed several fiboids. Since I was also diagnosed with BC at the same time, and my gyno said that the fibroids were nothing to worry about at the time, we did nothing. Of course, I have been through 4 DD AC, and 4 DD Taxol, and 9 months of Herceptin, so far, and tamoxifen for almost 7 months now. I just had my yearly exam, and another ultrasound has shown that my uterus has DOUBLED in size (volume)!She is stumped, so I agree that it needs to come out, but my gut feeling is that it happened because of the tamoxifen. Has anyone else experienced this? I'd like to be able to tell both my gyno and my onc about anyone else's experiences.

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Jun 13, 2007 12:20PM Sam91 wrote:

Laura - Thanks for responding to my other post - I guess I got on the wrong formum by mistake. No I don't have fibroids. I had the uterine biopsy because I started spotting and haven't had a period since last May. The biopsy came back okay, but these damm stomach pains are killing me. My DH keeps asking if I called the dr and I said why to tell them I have a stomach ache???

I agree that it seems your problem probably is the side effects of tamox since it has doubled in size. Good luck
Sam Dx 3/23/2006, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Jun 13, 2007 12:48PM jpann39 wrote:

I would think you would be justified in saying that the doubling in size is a SE of tamoxifen......I know one of the listed SE's is uterus thickening....isnt that basically the same as what you are experiencing????? There use to be a lady here that posted off and on, and she had the same thing as you but I havent seen her post for a few months now....
Research the side effects of the tamoxifen via the makers web site and see what you might find.

'Gain strength by the positive and don't be sapped by the negative" Dx 11/4/2006, IDC, 2cm, Stage II, Grade 1, 0/9 nodes, ER+/PR+, HER2-
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Jun 13, 2007 01:55PM roseg wrote:

I never had fibroids that I knew about until I started on tamoxifen. Since I had been having yearly checkups it's fair to say that tamoxifen caused them.

Are they causing you problems? My issue was that they caused me heavy menstrual bleeding and I became anemic. That turned up at a routine health assessment and was fixed up with a course of iron supplements.

Why is she telling you that you need surgery?

Uterine thickening if different from fibroids. Fibroids are VERY rarely cancerous. Uterine thickening can be cancerous and is usually investigated.
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Jun 13, 2007 04:45PM VickiTN wrote:

I started having thickening of the utereus after taking Tamoxifen. I had two uterine biopsies and both turned out okay. But, when I began "spotting" and the latest vag ultrasound indicated continued thickening, I said "that's enough!".....so, I had a total hysterectomy on May 29th and, thankfully, all my pathology turned out fine and I'm recovering nicely from the surgery.

Uterine thickening is listed as a potential side effect of Tamoxifen.

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Jun 13, 2007 07:45PM Jaybird627 wrote:


My fibroids got bigger and my uterine lining thickened while on Tamoxifen. Both common side-effects I think. I'm off of it now and just fine.....

Jaybird. My hopes are not always realized, but I always hope - Ovid.
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Jun 13, 2007 07:59PM Greene13 wrote:

I was diagnosed with DCIS in 2004 and had a lumpectomy followed by 6 weeks of radiation. I have been taking Tamoxifen for 2 1/2 years. I just had a total hysterectomy in January for fibroids, a polyp and 8 weeks of heavy bleeding. I was postmenopausal for 2 years when the bleeding started. I believe that this was caused by the Tamoxifen. Has anyone else ended up with a hysterectomy after taking Tamoxifen?

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Jun 14, 2007 03:17AM Peggins wrote:

I was on Tamox for 15 months. During that time my fibroids grew and my endometrial lining thickened. I spotted (I have no ovaries)) and had cramps. I had a biosopy and then a D & C. Both neg for cancer. I switched to femara and kept my uterus and my symptoms have ceased. I see the GYN in a month for confirmation.
Good luck to you,
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Jun 14, 2007 03:19AM VickiTN wrote:

Greene13 - I just had my total hysterectomy a few weeks ago - and it was due to issues caused by Tamox. I had taken Tamox for a little over a year. During that time a close watch was being made on the uterine thickening and cysts on ovaries (had 2 uterine biopsies). When I started "spotting", that's when the decision was made that I needed to go ahead and have the hysterectomy. I'm so thankful that I've now got that surgery behind me.
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Jun 14, 2007 05:41AM threadbear wrote:

Rose, I have not had any bleeding since my first Taxol treatment late last July. I did have heavy bleeding a couple of years before, but then it slowed and I had spotting now and then for about a year. Just thought it was peri-menopause. Anyway, I'm not having problems now, other than a protruding abdomen, as I am exercising more and have kept off about 10 pounds since before chemo. I have agreed to the surgery, because I'm 52, and anything abnormal in my body now scares me! I also don't want to go down in history as having the largest fibroids LOL! I just feel that this rapid growth was due to tamoxifen. I'm not sorry that I take it, but can't seem to get my doc to accept this as the reason. Oh well, looking forward to getting this over with. My gyno doesn't have an opening in her surgical schedule until August, though.

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Jul 14, 2007 03:30PM mtriso wrote:

Does anyone know if the thick uterine lining goes down (or away by itself) after you stop Tamoxifin?

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Jul 15, 2007 01:44AM roseg wrote:

Yes I believe so, but not necessarily quickly.

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Jul 14, 2008 04:48AM JulieJ wrote:

I am 53 and have had fibroids since I was 38. My periods stopped naturally in Jan 2003, at which time I had a 16 week size uterus, and was considering a recommended hysterectomy because of incontinence and "collision pain"(!) during sex. I had a diagnosis of BC in July 2003, with subsequent lumpectomy, radiation therapy, and Tamoxifen, so I`m just coming up to the 5 year mark. I had a hysteroscopy last August because of spotting, all well, no biopsy necessary apparently, but the US before the op showed the fibroids have grown and the uterus is now an 18 week size, also the endometrium had thickened to 10mm. For the past few weeks I`ve had low persistent pelvic pain, which is eased when I sit down. Going to the docs on Wed, but would really like to avoid a hys if possible. I do think that the fibroids have grown because of the Tamoxifen, as post-menopausally they should in theory shrink. Still waiting patiently for that.

A positive note: I feel 200% better in myself since my twice-a-month periods stopped - and no more mood swings!

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Jul 14, 2008 08:33AM Harley44 wrote:

Tamoxifen causes fibroids to grow, because it acts as a 'weak' estrogen on the uterus.  I have a fibroid tumor, but my drs. say it isn't causing me any problems.  I disagree... it has caused me to feel bloated, and lower back pain, and the list continues.  I also have had irregular bleeding in the past, and thought it was hormones.  Now that I have been taking Tamoxifen for 8 months, my uterine lining is THICK! and I am going to see a gyn onc next week, on July 22nd.   I have stopped taking Tamoxifen, at my drs. urging.  I am afraid to not take it because of the bc recurrence risk.Oh, and I am having bleeding after sex, but my solution has been to just stop having sex.  I feel like a COW, I am so huge!, and I think that the fibroid has caused me problems with constipation and urinary frequency issues.

I am going to ask this dr. to do a hysterectomy, because these parts never worked right, and I don't want to have to worry about more cancer...  I am already terrified that this endometrial thickening is cancer!


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Jul 22, 2008 09:03PM lsfarin wrote:

My MD has recommended starting Tamoxifen; however, a year and a half ago I had fibroids (out of nowhere) that grew to 12 cm in about 9 months. Maybe I should have had a hysterectomy at the time (to avoid this conundrum now) but I had uterine artery embolization instead, which seemed to solve the problem, at least for the time being.

 I'm pretty sure my fibroids WOULD come back if I started on Tamoxifen, but is the trade-off worth it? Should I just plan on having to have a hysterectomy in order to reduce the risk of developing cancer in my remaining breast (for the record, I only had non-invasive DCIS -- plus a pretty massive IPC -- but the DCIS was in several areas of the left breast, which I did have removed 5 weeks ago).

 I'm almost thinking an oophorectomy might be a better choice, even though I'm not the usual candidate, because it's a less invasive procedure than a hysterectomy. I'm 50 years old, pre-menopausal, but have very irregular periods (have missed a couple in the past year).

 Any thoughts? 

Dx 1/15/2008, DCIS, 6cm+, Stage 0, Grade 2, 0/2 nodes, ER+/PR-, HER2-
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Jul 22, 2008 09:15PM hopefor30 wrote:

I have not been diagnosed with fibroids, but wonder if I have them.   I have been on tamoxifen about  7 months.     About two weeks before my period, I get extremely constipated and feel very bloated.   Twice, the day before my period started, I got pains in my hip that almost feels like sciatica.   I did mention my hip pain to my onc, but at that time I had only had it briefly.    I got it again with this period.  I also did not tell my onc that I thought the hip pain was related to my period because I didn't realize it at first.

So, is is possible that I have fibroids that are growing and pressing on my sciatic nerve?    Of course, I also worry about bone mets since I have an occasional pain in my hip, but my initial diagnosis was only a 3mm tubular with negative nodes, so I try not to go there.

I am going on vacation next week -- will call my onc when I return if the pain in my hip returns, but this whole thing really sucks.   You need the tamoxifen to prevent a recurrence and then you have to worry about the side effects.....


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Jul 23, 2008 05:58AM Harley44 wrote:


I think that my fibroid is the cause of my lower back problem... I had an MRI back in April and they found that I have a herniated disc, but I think it was caused by that fibroid pressing against nerves, because I also had what sounds like classic 'sciatica' symptoms, with the entire left side being affected; I had pain in the lower back, and then my left butt cheek , then down  my leg.  Of course, none of my drs. will ever admit it could have been the fibroid that caused this.

I saw my gyn onc, and he was nice, but... I am not getting any help from him.  He wants to do a biopsy of my endometrial lining but he feels he can get a better biopsy in the hospital and I agree.  I want to be asleep and not know what is going on.  However, he flat out refused to do a hysterectomy for all these diseased parts.... idiot MEN!!

Anyway, now I have to call my regular onc to see whether they will switch me from Tamoxifen which is causing all these issues to get worse, and my gyn onc 'thinks' I have a uterine polyp also.  If they won't switch me without me getting a hyst., then I will INSIST that THEY speak to this guy and get together on my treatment plan, cause as I told the gyn onc yesterday, I am not a "wait and see" patient, and I WON'T go for all these stupid u/s and biopsies...


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Jul 23, 2008 06:23AM spar2 wrote:

Harley, do you have a date set up for the hospital biopsy yet?

www.spar2.multiply.com Lets help make each other's life better
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Jul 23, 2008 08:08AM Harley44 wrote:

No, he didn't set up a date for the biopsy... he was too busy getting ready to go on vacation next week.  Don't EVER see a dr. BEFORE he goes on vacation, because he won't be willing to do ANY kind of test or any surgery, or even to schedule it.

They set up an appt. for an ENTIRE month from now, to see him again.  WHY?, you ask, when he didn't do anything anyway.  I guess he'll schedule the biopsy when I see him on Aug. 21st...  who knows? 

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Mar 17, 2012 10:36AM linsky1 wrote:

Concerned... I was diagnosed with multiple fibroids about 6 years ago and was told once I reach the menapause they would shrink.  I got BC in 2008 and have been on tamoxifan now for 4 years.  I recently had a problem with my bladder (had to have a catherter as couldn't wee) I was sent to urology to have a scan, nurse told me everything looked fine but that my fibroids have got bigger and now have to be investigated... I think Tamoxifan has caused them to grow instead of shrink, my tummy is constantly bloated... as anyone else had trouble after taking tomoxifan for this long.... Linsky

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Mar 17, 2012 10:36AM - edited Mar 17, 2012 10:37AM by linsky1

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Apr 10, 2017 05:55AM Tpralph wrote:

I have many fibroids as well the last check the largest was 6cm. I may have to go on tamoxifen - still awaiting surgery for final pathology. What is the alternative to tamoxifin and is it as effective? God knows I don't want another cancer in the future if I can prevent it now

Dx 3/10/2017, IDC, Right, 2cm, Grade 2 Dx 4/10/2017, IDC, Right, <1cm, Grade 1 Surgery 5/17/2017 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Apr 10, 2017 09:45AM Artista928 wrote:

Appt with MO on 5/8. We'll see on 5/4 the latest status on my uterus fibroids, if they are the culprit for the lower abdominal pain/discomfort that comes and goes and right kidney area pain.

Tpralph- Hang tight till you get your sx path. You didn't put in your profile your ER status. Once you get your sx path, finish the details on your profile so folks can give you appropriate advice. Try not to fret. Fibroids don't cause cancer or increase chances. Tamox can but it's not considered a high risk. I hope to get my uterus yanked and whatever else they can take as the discomfort I seem to have are from my 4.

Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 10, 2017 04:52PM annoyingboob wrote:

i had small fibroids before tamoxifen. took T for 1 month and my uterus felt ENORMOUS. i stopped it last Tuesday. had a physical with my primary md who confirmed, yes uterus is big. now, a week after stopping, im starting to feel better. not sure uterus will shrink back to normal, but I don't think the benefits of T warrant a hysterectomy, etc... so frustrating.

Dx 12/2016, DCIS, Right, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 1/4/2017 Lumpectomy: Left, Right Radiation Therapy 2/20/2017 3DCRT: Breast Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 10, 2017 05:43PM Tpralph wrote:

yes tamoxifen is not recommended for DCIS or prophylactic treatment due to the potential complications/ risks outweigh the benefit according to my medical resource "uptodate.com" that is part of the black box warning

Dx 3/10/2017, IDC, Right, 2cm, Grade 2 Dx 4/10/2017, IDC, Right, <1cm, Grade 1 Surgery 5/17/2017 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Apr 15, 2017 09:13AM Marie47 wrote:

I am in same boat. 10 months of tamoxifen and fibroid taking up entire uterus, at least 7.5 centimeters.

What to do? Myoectomy, partial hysterectomy, full hysterectomy, leave or take ovaries? Any advice sweet sisters out there?

Dx 4/21/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 6/5/2016 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/7/2016, DCIS, Left, <1cm, Stage 0, Grade 1, ER+, HER2- Hormonal Therapy 8/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/26/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 2/28/2017 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 2/28/2017 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting

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