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Tamoxifen and ovarian cyst

blueice
Posts: 5
Joined: Sep 2013

I was diagnosed as DCIS and had Mastectomy in Sept. last year.  I had taken Tamoxifen between Oct. 2013 and January this year.  Only about two weeks ago, I stopped Tamoxifen because I found a 7cm ovarian cyst through ultrasound.  I did some google-searches and discovered some important recent studies consistently finding that the pre-menopause women with breast cancer and ER+ (just like me) have 50-81% of chance to develop an ovarian cyst after taking Tamoxifen.  So, after consulting with my Oncologists and Gyn (2 of them agreed for me to stop Tamoxifen and 2 others against it), I decided to stop Tamoxifen.

 

Based on your experiences, did you have similar problems in developing an ovarian cyst with Tamoxifen? Did the cyst go away by itself after you stop Tamoxifen?

 

Moreover, if I take out the cyst by surgery and then start taking Tamoxifen again, will I see some new cysts pop up in the future?

 

I very much appreciate it if you could share your experiences with me on what you went through on this and what advice you may provide to help me make a right decision. Thank you so much in advance!  

hope67's picture
hope67
Posts: 168
Joined: Apr 2013

and I haven't got any cysts so far. But my sister and her sister in law who were also on Tamoxifen, both did. And they both had their ovaries removed and continued with Tamoxifen.

I'm sorry, this is probably not what you wanted to hear.

Carmen

RozHopkins
Posts: 475
Joined: Dec 2010

I had Ovarian Cysts before Tamoxifen and after.  It appears that I am one of many where they keep popping up and disappear again.   I believe it is quite common.  My Gynacologist wasn't concerned at all but did find at the same time thickening of uterus lining possibly due to Tamoxifen and a large benign polyps.  This was removed.  I came of Tamoxifen after two and a half years.  Now have jaw bone disease also. Probably from same medication and chemo.  Very uncomfortable on and off anti estrogens.  I am going for quality of life for now and see if it reoccurs as I go along.  As all these meds are now supposed to be taken for 10 years duration I just refuse to wait until nearly 70 to feel better, be ache free (by then normal aches will have come any way), and not look seven months pregnant. But that is just me.  My mum took Tamoxifen for five years, then the norm, and got two different breast cancers after that.  But she smoked and kept smoking.  I never have.  Good luck.

TKMomma60
Posts: 7
Joined: Feb 2014

have had several cysts.  they hurt at times but understand unharmful and usually disolve on own.  i am scheduled fir my third d&c since starting tomox for uterine thickness and polyp removals.  i have a call into my oncologist to stop the drug.

cinnamonsmile
Posts: 1049
Joined: Dec 2010

Did you have purely DCIS with no IDC? And did you have a single or double mastectomy and did you have clean margins (I assume you did since you don't mention radiation)?

The consensus from the oncologists I have seen and the boards for DCIS on breastcancer.org is that if ONLY DCIS with no micro-invasions or IDC involvment AND had a BMX, Tamoxifen is overtreatment. 

The head of the oncology clinic I saw said that since I had DCIS, with clean margins with a BMX, that since the milk ducts were gone, the cancer was gone (although we know that there is always a chance of reoccurrence even though it is extemely small, it can happen) and Tamoxifen would be overtreatment and the possible negative side effects would outweigh any benefits of that particular drug.

I am not sure if that holds true if you had a single mastectomy.

I think it would help you if you went to the DCIS forum at breastcancer.org,too (http://community.breastcancer.org/forum/68). There are many more women there that have had DCIS than here (not saying that this site isn't helpful, just saying you will find many more people with DCIS).

DCIS doesn't warrant the same treatment protocols as IDC, IBC, ILC or any  other invasive breast cancers.

disneyfan2008
Posts: 5488
Joined: Oct 2010

I just finished tamoxifen in Aug of last summer....I  had total hystectomy due to thickening of uterus but never a cyst...I hope you get more info from others here...(I have had cysts in the past prior to the med)

 

Denise

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