Fibroids and tamoxifen

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?

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

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!

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? 

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

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

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

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.

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?

My endometrium has decreased on T. I started at 6 mm 6 weeks into T then a few months later 4 mm and my latest of 10 days ago is 3 mm. But T seems to be causing my fibroids to slowly grow according my MO. Uterine and endometrial cancer risk is very low. I was quoted 1% from T.

Hysterectomy is up to you. My obgyn said not needed. Right now, sure it's not because I'm not miserable yet. Many women whose fibroids are painful and wreaking havoc on quality of life choose to have it taken out. Mine isn't continual so I'm holding off some. I anticipate at some point my several 3 cm will get larger and/or angrier as my MO says T can rattle their cages and eventually make me go for it.

Hi Nffcbeano,

I just came across your post. In the six months before I was diagnosed with breast cancer, I took Esmya, which in North America is called Fibristal (the pharmaceutical name is ulipristal acetate). I believe that this drug played a role in the development of my tumour. I had MRIs six months apart, and took Fibristal for a three month period in between the two MRIs. My tumour was 2.1 centimetres, and I know for certain that it was not there before I took Fibristal because my first MRI was clear. The second MRI, after taking a 3 month course of Fibristal, revealed the tumour.

Did you take this drug prior to your diagnosis? What subtype of breast cancer were you diagnosed with?

Thanks.

Stephanie