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Topic: Enlarged uterus and fibroids? Is it 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: Feb 5, 2010 12:01PM

hopefor30 wrote:

Well, I am back with yet another potential complication....I have been feeling like my abdomen is bloated and hard lately -- asked my onc who said it was nothing and finally went to see my PCP who gave me a pelvic exam -- said my uterus is enlarged -- like a melon.

I am scheduled for an ultrasound in a few days, but my PCP was leaning towards fibroids.   Anyone get fibroids while on tamoxifen?   I have so many things wrong with me that I don't know what to think.   I was just diagnosed with a fatty liver from tamoxifen and I was treated over the summer for thyroid cancer -- I have had regular periods on tamoxifen - no real hot flashes (got tested and I am an intermediate metabolizer) -- but after treatment for thyroid cancer my periods stopped and hot flashes started.

Now, my uterus is enlarged.   I am pretty upset right now because I don't want more surgery.   I've had 6 surgeries over the last 2.5 years -- and after my DIEP recon my stomach looks great -- last thing I want is to cut it open again -- and especially if I don't have a plastic surgeon doing the work.

Anyway, was just wondering if anyone else had fibroids and what did you do?  I think mine are causign symptoms --- constipation and urinary urgency -- no pain or bleeding.


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Feb 5, 2010 12:11PM awb wrote:

hope---I developed  fibroids and large ruptured ovarian cysts while on tamoxifen (detected by CT scan, then also on TVUS)--gyn wasn't concerned at all about the fibroids, but was concerned about ovarian cancer. I ended up having a TAH/BSO as the ovarian mass was nearly 8 cm and they couldn't do it laproscopically. Fortunately, everything turned out bening. I wasn't having any symptoms from the fibroids, but I was done with childbearing so I didn't need the uterus any more. I would look into getting the fibroids removed if they are causing you symptoms--sometimes they can be removed vaginally by laproscopic surgery.


"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Feb 5, 2010 01:34PM hopefor30 wrote:

Yes, I am sure they will have to come out -- I am just hoping it can be done vaginally or by laproscopically -- I don't want the full abdominal surgery.   And I hope they are only fibroids....with two cancers already, don't think the thought of ovarian cancer hasn't crossed my mind.   I've been on the internet for hours.    For now, I will just have to see what the ultrasound shows...

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Feb 5, 2010 08:34PM - edited Feb 5, 2010 08:35PM by cp418

A friend of mine had the identical complication after a year on Tamoxifen and had a hysterectomy.  Her uterus was the size very enlarged too.

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Feb 10, 2010 04:20PM gfbaker wrote:

Hey awb,

Did they tell you that the ovarian cysts were caused by tamoxifen? I was just at my annual exam & we did an ultrasound to check out the uterus b/c of tamox. Turns out I've got multi cysts on an ovary; enough that they ordered a thorough ultrasound and ca125 marker test. Uterus is just fine. I hadn't heard anything about ovaries with tamox but that would make me feel lots better than the chance of ovarian cancer.

Dx 5/6/2008, IDC, 1cm, Stage IIA, Grade 3, 1/13 nodes, ER+/PR+, HER2-
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Feb 11, 2010 10:08PM - edited Feb 11, 2010 10:09PM by donnymommy

This Post was deleted by donnymommy.
Dx 2/19/2009, DCIS, 1cm, Stage I, 0/3 nodes, ER+/PR-, HER2-
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Feb 11, 2010 10:14PM donnymommy wrote:

Anyone on tamoxifen and zoladex? I have been taking both for 10 months, and periods stopped completely for 8 of them. 2 months ago I started bleeding irregularily and now every day (light spotting). My onc had me make an appt with a gyn specialist to check things out. But reading some of these posts and other tamox forums I am really concerned about the health of my uterus and ovaries..  I have stepped up the exercise and good eating for months now, but the cramping and bloating and spotting are really frustrating...anyone have advice?

Dx 2/19/2009, DCIS, 1cm, Stage I, 0/3 nodes, ER+/PR-, HER2-
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Feb 11, 2010 10:14PM GryffinSong wrote:

I had fibroids several years before my cancer diagnosis, so mine weren't caused by tamoxifen, but for what it's worth, my scar is basically non-existant. I couldn't have a lap or vaginal because the fibroids were so numerous and large that my uterus was about the size of a five month pregnancy. So I had an abdomenal, but the scar is down so low, and covered by hair, that it might as well be invisible. It doesn't interfere with the abdomen at all. I'm very pleased.

bmx, no recon - December 16, 2008, AC/T, rads Dx 11/4/2008, IDC, 1cm, Stage II, Grade 2, 3/18 nodes, ER+/PR+, HER2-
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Feb 11, 2010 11:11PM hopefor30 wrote:

Well, I got the results from my ultrasound and I think I feel worse....no mention of fibroids (although I know I had one at last ultrasound done about a year ago) -- I do have endometrial thickenng 2.5cm -- I think that is really thick.....and two cysts on ovaries, but they weren't too worried about those....said they looked like a simple cyst and a corpus luteum.    I am scheduled for an endometrial biopsy next week.

My PCP who did the initial internal says the ultrasound does not explain what she felt which was a large, hard, lumpy uterus....so now I don't know what to think except that I am worried....

Will post back when I know more....

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Feb 25, 2010 08:31AM tinkersmom wrote:

I just had a partial hyst with ovaries removed Feb 4th....I had laproscopic after getting 3 opinions...and believe me the laproscopic was a piece of cake after last Januarys mastectomy with flap tram recon....1st and 2nd opinion wanted to do an open hyst...i just did not want another 3 months on the couch...finally found someone who would do lapro and it went very well..im finding it to be true what my onc said "all gynocologist hate tamox", Im 53 and not experiencing any bad mood swings yet, and the hot flashes are actually not as bad was they were on tamoxifen....i am worried about starting the AI's though, from reading several posts here.

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Feb 26, 2010 08:09PM lene17 wrote:

After 10 months on tamox., I had a pelvic ultrasound which showed a giant polyp or fibroid (they still are not sure which is was.)  This was compared to the ultrasound of exactly one year previously.  Of course, I was freaked out about the possibility of uterine cancer, etc.  After a very long D&C (the polyp or fibroid was difficult to remove vaginally,)  6 months later, my lining is perfect and no growths showed up.  I did change to Aromasin - don't know if that's why nothing grew again.  

Interesting what you said about the fatty liver.  I was diagnosed with that and sent to a liver specialist who was monitoring my levels.  Recently, all blood levels were normal.  Was this because I changed from tamox. to aromasin?  Don't know! 

lene17 Dx 8/27/2008, ILC, <1cm, Stage I, Grade 1, 0/5 nodes, ER+
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Feb 26, 2010 08:40PM awb wrote:

gfbaker----both my onc and gyn said the tamox didn't cause the ovarian cysts; I'm not sure if I beleive them or not (I never had any trouble with cysts before tamox and have read of some others here that also have had them with tamox); but I think if it is a SE, it isn't really very common. Tamox really is a very good preventative medication; I continued to take it for 3.5 years after my surgery to finish up my 5 years. Now I take Evista.


"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Feb 26, 2010 10:01PM hopefor30 wrote:

Well, I am now scheduled for a hysteroscopy and D&C to remove either a polyp or fibroid as well which showed up on a pelvic ultrasound.   I am worried about endometrial cancer as well, but my endometrial biopsy was benign so hopefully that is a good sign.

The pelvic ultrasound also showed fibrous tissue on the right ovary which did not show up on ultrasound -- that's kind of scary.   I need to have that taken out, but since I am probably going to end up with a hysterectomy and ooph, I will wait for that one.

Have my day surgery next week....not looking forward to it....and hope I can avoid any major surgery.   But you won't convince me this isn't all from tamoxifen....yes, it's a good preventative drug, but in my case, it had some bad side effects.....wish they could explain why....

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Oct 26, 2010 04:37PM bichonlvr03 wrote:

I was on tamoxifen for 4 1/2 months and went off two months ago because of severe pelvic pressure pain.  I felt better almost immediately after going off of it.  Yesterday I had my annual gynegologic exam and my doctor said my uterus was the size of a 10-12 week pregnancy.  She thinks its fibroids, and said she didn't think it was because of the tamoxifen.  Now I need a pelvic ultrasound.  Despite what my gyn. thinks, I am convinced my enlarged uterus is because of tamoxifen.  I will never go on it again.    

Dx 12/17/2009, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes, ER+
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Oct 31, 2010 10:29PM redheadace1 wrote:

Hopefor--I am convinced that Tamoxifen worsens fibroids. I had fairly a couple of fairly large fibroids when I started taking it, but after a couple of months on the Tamox the fibroids started to grow rapidly, particularly during the final two weeks before the hysterectomy I ultimately had to have. It was frightening to see how quickly they grew; by the time they took my uterus it was the size of a 5 month pregnancy. On the advice of my gyne and my onc, I also had my ovaries out. Side effects from Tamoxifen were, for me, minimal other than the fibroid growth. But the hysterectomy and the oophorectomy were the worst part of my cancer experience, and I continue to have a terrible time with surgical menopause. My doc also denied that the growth was caused by the Tamox.

 Hope you're feeling better and that your issues are resolved somewhat.


Dx 6/08, DCIS stage 0, Grade 1, ER/PR+, 0/0 nodes, lumpectomy 7/24/08, finished rads 10/16, thinking about Tamoxifen
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Nov 1, 2010 07:11AM hopefor30 wrote:

Hi Ace -- yes my issues are resolved -- after a total hysteretomy and ovary removal.   Glad it is all gone.   My stomach feels so much better.   The surgical menopause has not been too bad.   I do get hot flashes, but they are not severe and the waking up at night hot is getting better (it's been about 4 months since my surgery).  

I do seem to get more tired....have gained a few pounds and my biggest complaint now is feeling achy.   I have not switched to an AI yet -- that's coming in Jan, so I am a little worried the aches and pains will get worse.

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