Tamoxifen and ovarian cysts

siona

Hi Wendy

If I may ask, what are your gynae's thoughts on the cysts..MIne is ging ho on a hysterectomy (though having said that I have just had an abnormal pap smear).

Many thanks

Siona

atanea

Hi, this is an old but very interesting post, I'm having similar issues.

Can anyone give an update on how those cysts resolved? And ophorectomy+hysterectomy later side effects?

I was taking Tamoxifen and Zoladex/Lupron shots for two years, stopped those shots 6 months ago (but kept Tamoxifen), my uterus lining started getting thick, US showed cystic hyperplasia, pelvic pain for 15 days, period came once (uterus lining was more thin after that, but is still heterogeneous), estradiol isn't low anymore and I'm again with pelvic pain. I'm premenopaused again. Meanwhile, all of the sudden a big 6 cm septated vascular cyst came from nowhere in just a month.. gyn onc. says I should opt for oophorectomy+hysterectomy no matter what, just to be safe, but my breast onc. is firmly against that. They send me to MRI, MRI says it's just a pure cyst and to just keep it watched with US...after reading all those posts I'm not convinced it will go away.

I have read about cysts and Tamoxifen in premenopaused woman here: http://jjco.oxfordjournals.org/content/35/10/607.full ) maybe the indirect/direct effect of Tamoxifen not being opposed by Zoladex/Lupron at ovarian level is causing this.

But I would prefer to wait before opt for ophorectomy+hysterectomy. I'm going to do it, but I would prefer to do it at an older age.

Thanks

Anonymous

atanea------I vaguely remember asking my gyn if I should see a gyn oncologist, and he said "not necessary, he'll recommend the same thing". To this day, I still wish I had gone at least for a consult. Who knows, the outcome may have been different. (maybe he would've had me stop the tamox temporarily to see if the ovarian cysts got smaller, and then maybe I could've avoided major surgery (TAH/BSO); but we will never know). If I had it to do all over again, I would definitely have gone off the tamox, waited to see if the ovarian cysts shrunk down, and asked if they could've just removed the cysts and not the ovaries. Going thru immediate surgical menopause and recovering from major surgery at the same time was rough.

anne

atanea

Hi awb, thanks for the reply.

I did went to a gyn oncologist, that wants it all out no matter what, due to my high risk of breast/ovarian cancer (family risk and my breast cancer and that 'hormones flow is bad for me' (exactly words) and that cyst (although the MRI says it is benign, not sure if we can 100% trust that), and other minor things I have, like, fibroids (some 3 cm), minor dermoid cyst (no consensus about that, some think it's just scar tissue due to a previous surgery I already had to the left ovarian, precisely to take a 3 cm dermoid cyst), it just happens I already had all that before even started breast cancer treatment (except this new cyst) and they never told me to go and take my ovaries and uterus out!

I'm really mad with this, I ended Zoladex/Lupron shots 6 months ago, I went to a rough menopause during those 2 years, the second year was more difficult, when I stopped the shots, it all went away, but I suffered for 2 years! If they thought my risk was high, then why they didn't tell me to took all out at the first place, before starting hormonal treatment, instead of taking Lupron/Zoladex shots? I would have entered menopause the same way, suffered, but by now, 2 years later, my body would have probably adjust, I would still have menopause later effects, but the first year's pain would have already go away. But no, they gave me those shots for 2 years, then stopped, and now that my body is not in menopause again, they want me to go trough all that again, for a second menopause, but not even a year has passed! My risk was the same at the beginning, and I already had most of the uterus/ovarian changes (except this new cyst, that seems benign). Nobody seems to know what the hell they are doing..

Maybe it's Tamoxifen, but I'm not comfortable with stopping it and wait it to pass. I'm also not comfortable with taking those shots again, and I'm also not comfortable with going trough a menopause again right now. I decided I will take it all out, in a near future (maybe 5 years from now or after Tamoxifen end), but I would prefer not right now. I don't have kids yet and I have been trough a lot, with breast cancer and acute leukemia in just a year (and other stuff that they thought it could be mets, but it was benign). I'm strong, but I'm also very tired.

I just have to decide if it makes any sense in doing another small surgery now (just to take the cyst out) and maybe get recurrent cysts later (if its Tamoxifen they will came back) and go for a second bigger surgery anyway, later, or if I just go and do it all right now, and go for a living hell, again, in the next 2 years.

Even if I go for a smaller surgery now, just to clean the cyst.. some woman I met that went to do a surgery just like that ended up without ovaries and sometimes uterus...If I go for any kind of surgery, I will have to sign a consent about the possibility of taking organs out or not, if I say no, they may not take the cyst, not even if it looks not benign at surgery time (and that's a very serious thing), if I say yes, I may end up without ovaries and uterus...hell.

This seems such a common problem for premenopause woman, I don't even now why I never heard about most of this problems before.

I'm going to talk with other gyn onc. today, let's see what he says.

atanea

Well, just to keep an update. He thinks I should take it all out, but not now, maybe some years from now. He also thinks I shouldn't do any surgery, just wait and see (US) to watch the cyst size and looks. That's what I will do.

Kat_Tamati

Im less than 3 months on tamoxifen and my ovaries have been playing up.

I've been to many drz n keep telling me its thrush or normal side effects. I still didn't feel right n pain was getting worse.

I've told my oncologist n drz my symptoms everytime

I went to a woman's clinic for another option she sent me straight for a pelvic scan which shows I have Cyst in my overies n thickening in the walls of my womb.,

Very anxious and scared

atanea

Hi Kat_Tamati,

Sorry to hear that you are having hard time with Tamoxifen.

About my previous post, meanwhile, some months later, the big vascular 'cyst' that appeared from nowhere and freaked me out, just went away...false alarm and a lot of pain from nothing...From all I have read, cysts are common in pre-menopaused woman taking Tamoxifen, and some also have thickening in the walls of the womb, that's common, but it should be watched by regular US, I'm having one more or less each 6 months. I think my body adjusted to Tamoxifen, because now I have my normal period regularly than before, and since that, I didn't have any more cysts or womb thickening, but when I didn't had my period regularly I did have womb thickening.

I decided to wait some years before going to a new surgery to take all out, I will do it, but maybe after the end of Tamoxifen or some years after. Of course I'm still afraid of ovarian cancer, but I'm just too tired to think too much about that or going to a surgery now.

Keep calm, your body may adjust.

agr68

I'm glad I found this thread. I'm 50 now, was diagnosed at age 46. Three and a half years on Tamoxifen. After the first two years I had cataracts, had them removed. A very small percentage of people have eye problems with Tamoxifen.

Eight months ago, I had a 5 cm ovarian endometriomal cyst and the left ovary removed (they were connected) along with my fallopian tubes. Now another 6 cm cyst has grown back where the left ovary was. The Gyn is puzzled because usually to have endometriosis, she says you must have a uterus, and I don't. My uterus was removed in 2011 (8 years ago) due to fibroids. This is crazy, and I feel like a freak. Why can't my body handle tamoxifen?

Two weeks ago, I had a CT scan and an ultrasound, they think this new cyst is an endometrioma, and want me to have it drained under CT guidance. I asked if it would just come back, and the Gyn said "possibly". I'm due to see my Oncologist in 2 weeks, maybe he can think outside the box and figure out if I can go off tamoxifen and onto something else. Seeing as I only have one ovary, my estrogen levels are probably decreased now.

Thanks for letting me vent. I'm so flustered by all this I can't concentrate at work and keep screwing up. My boss got upset with me today and it just adds to the stress. :-(

I want to go off tamoxifen but I'm scared. I'm glad I'm not alone. If anyone has advice, I'm all ears! Thanks.

SummerAngel

Take a look at this related thread: https://community.breastcancer.org/forum/78/topics/859646?page=2#post_5133491

I have links to a couple of studies in that post.