ovary removal instead of tamoxifen

Hi there leklovessrk, I know you're concerned about the side effects of tamoxifen (and I am too) but it might not be so bad. My hot flashes mostly went away after a couple of months and I thought I was in menopause because my periods never came back. (Turns out my estradiol is actually quite high -- tamoxifen can cause that.) I'm brca-neg so I decided to go on tamoxifen, and now I'm going to ask about ovarian suppression.

As a highly triple positive I had the oopherectomy and have no regrets!!!

I'm five years out, four on arimidex and the side effects with drug lessoned over time:)

The surgery was a breeze and I'm so glad I did this!

Tricia x

Dita. tamoxifen will not shut down your ovaries.  It acts as a kind of fake estrogen and binds to any potential cancer cells so that real estrogen can't, and can't fuel the cancer.  it may or may not affect the ovoaries, but I was on it for five years and was still premopausal when I finished.

ditasea-----tamoxifen is not intended to "shut down your ovaries"--it doesn't decrease the amount of estrogen produced (like the aromatase inhibitors do); it just blocks the estrogen from binding to the receptors in the breast tissue. My oncologist explained that while on tamox 25% will continue with normal periods, 50% will have irregular periods, and 25% will stop altogether. Even after my oopherectomy, I had to stay on tamox as there is still estrogen produced in the adrenal glands, skin and fat.

anne

Hi, just my two cents....after having bc two times, 5 years on tamoxifen (no issues with it at all) and another bc after going off it, I opted to get those little cancer causing bombs of ovaries out! Way too much estrogen in me, even having my period right thru chemo and tamoxifen and no sign of slowing down at 53.  so it was my decision and I have never regretted it.

A few hot flashes initially, but no big deal.  Slight weight gain in my middle, but probably more due to ice cream than other things.  Vaginal issues (slight atrophy and dryness) solved with a moisturizer called Very Personal that works very well.

I'm delighted I did it.  The lack of worry is well worth it.  They make great bone drugs, since I am on arimidex, take D and calcium and exercise, if I need a bone drug, I'll take one.  I'm tiny, so would probably need one at some point anyway. 

I'll take bone drugs over cancer anyday!  Don't let the fear of this make your decision for you.  The surgery was easy, the recovery also.  I never needed anything more than tylenol.  It was boring, sitting around, but far far easier than the bc!! Mental relief is huge now.

I say do your research, but I'm a happy camper.  I have a few more wrinkles now, but at 54, I believe I'm entitled to those anyway.

Be well.

xoxo

I am 44 years old and was diagnosed with invasive ductal carcinoma in 2008 - stage 1, grade 1, estrogen +, progesterone +, HER2 -. My oncotype DX score is 12 - low risk of recurrance. I had a lumpectomy and radiation. I had a salphingo oophrectomy in Feb of this year ( uterus and ovary removal). I have tried both tamoxifen and Femara and cannot take either one - nor do i want to. I made the decision yesterday to not take medication at all and to monitor with mamos and MRIs. I feel liberated from drugs that don't feel right to me and that we don't know the long-term side effects of.

I'll be finishing chemo and rads, then have a prescription for Tamoxifen to start in January...Kinda scared and wonder if hysterectomy and ooph might be a good choice...My Mom had bc and no recurrence but got ovarian which took her life. My Gma had bc and no recurrence but got uterine which she also recovered from. I didn't test positive for the BC genes. Just weighing Tamox SE's with other stuff and looking for any advice...Thank you!! ~Beans

I am so glad I found this post. I too was put on Tamoxifen took it for three months and took myself off! Waiting on appt. with oncologist to discuss removal my ovaries. Had a partial hysterectomy 8 years ago at 33. The side effects were just too much for me. I have rheumatoid arthritis and I have never had the joint pain the I endured for those three months. Every joint in my body hurt. I felt terrible. I could not deal with it. Been off Tamoxifen for over two weeks and I feel better already. I was having hot flashes, mood swings, etc. on Tamoxifen - is instance menopause really that much worse???? I am either going to take my chances or have ovaries removed. No more drugs for me!

Thanks, I may have to track down a copy.

I've been told I need to stay on letrozole indefinitely. I'm 45 and on zoladex to shut down my ovaries. The SE's aren't too bad, mild hot flashes, joint pain (esp hips & back) and decreased libido. So I'm now faced with 10 years or so of monthly zoladex injections (feels like getting a piercing) or oophorectomy...

My oncologist did say that the ovaries may do more than just estrogen production, so there may be long term benefits in keeping them. I have to admit I don't want to do something that can't be reversed so am leaning towards being a pin cushion for the forseeable future.

It would be nice to not have to be in the postion to make such decisions, but we gotta do what we gotta do... 

Thanks for bumping – this was the thread I was looking for! I am pausing Tamoxifen because of side effects that won't go together with radiation, or with anything really, but I'll start trying again January 10. I have been thinking of suggesting removal of the ovaries if the monster pill still behaves badly – but after reading this, I'd rather take the risk of keeping my estrogen. Unless Tamoxifen is doable, of course.

Hi. Kt1966, i saw that you wrote that you were looking at taking zolodex shots for about ten years. Check into this. I was told by all of my drs that you cant take these shots for more than two years. Very hard to get an answer on the reason for this time limit though i once heard that there is an issue of increased bone loss after that. I also read up on the drug itself. It is a powerful drug and i struggled with the decision of impacting my body chemically or surgically. I took the shots for six mos but ultimately decided on an ooph (last week) as i am 50 and, tho BRCA neg, have many cousins w BC. Thise who survived all had issues w ovarian cysts and ultimately did oophs. I also couldnt see doing the shots for two yrs and then needing the ooph anyway. I really wanted to avoid surgery and it wasnt an easy decision but i am feeling releived that its done.



Just look investigate zolodex itself.



Sgreenarch

Its so confusing.

I think medical oncologists are all in favour of drugs, like zoladex, and that surgeons are all in favour of oophorectomy and each thinks that their method is best.

Who knows who is right! I wish we didn't have to make such difficult decisions! 

Hi Everyone,

After 11 months on Tamoxifen I developed a nasty disease called Porphyria (as a result of tamox.) I opted for an ooph and complete hysterectomy. It has been one year since my surgery, and I have never felt better. I run, do yoga and lift weights and eat a great vegetable based diet. Had my ooph at 39.

take care,

Yes, I think ovary removal or medical shutdown can be done with or without AI if you can't take tamoxifen for some reason.

I've already done tamoxifen & had ?progression on it, so now am having medical shut down of my ovaries (zoladex) & an AI, letrozole. I just don't know which option is better- medical suppression or surgical removal of ovaries. Either way you get the menopausal SE's, maybe medical suppression is gentler as my SE's haven't been too severe.  

kt - I didn't say that well, it sounded from the above post by kconely2011 that if the ovaries are removed you don't have to take any anti-estrogen.  I think even if I had my ovaries out my onc would still have me on an anti-estrogen.  That is what I was trying (it's late on a friday afternoon!) to say.  In other words, ovary removal doesn't get you out of anti-estrogen medication as I understand it from my onc.