ovary removal and tamoxifen or arimidex

[paulin]

In Feb I was diagnosed with Breast Cancer and had a lumpectomy.  Stage I .5mm low grade no lymphs involved, Estrogen and Prog. positive.  Went through 7 weeks of radiation and in June started Tamoxifen.  Started having lots of hotflashes but still normal periods.  Then 1 month later I get a polyp removed from my uterus and D&C done (Found out about polyp before Breast Cancer but they put off the surgery till I was done with my treatments). I have not had a period since, And I have been regular all my life.  After complaining for months they did a hormone test and found out that my estrogen levels were extremely high (850).  Then they did an ultrasound and found a simple cysts on one ovary and complex one on the other.Both the gynecologist and the oncologist say I can either get my ovaries removed or wait and see if cysts go away, but they can not know if the complex cyst is bad or not until they remove it.  Because of my complex cysts and high estrogen I think they are leaning towards removing.  My question is this: Should I have my ovaries removed? What are the side effects of not having ovaries and how bad is it?  I heard sexual desire lowers which concerns me, bone loss and heart desease.  I am only 45.  Also she is considering switching me to Arimidex if I have surgery.  Is it better tohave 5 years of Tamoxifen and 5 years of Arimidex being I'm so young? When I ask the doctors what caused the cysts, they say they don't know.(I did not have any cysts in January)  Does anybody know if the tamoxifen could have caused the cysts and why my estrogen levels are so high?Thanks!

[CCF-RN,MSN-rf]

Dear paulin:  As this is a breast cancer forum, we will respond to the questions regarding the breast cancer.  The other questions may be more appropriately directed to your gynecologist.  It is not uncommon for premenopausal women to develop ovarian cysts while on tamoxifen - most will resolve spontaneously.  In terms of premenopausal women taking hormone therapy, tamoxifen is the drug of choice.  And the purpose of tamoxifen is to block the estrogen - especially to the breast tissue.  This may or may not result in menopause and this could be permanent or temporary, depending on the age of the woman and when she might naturally go through menopause.  If ovaries are removed, menopause is immediate and permanent.  The body will still produce some estrogen which is effectively blocked with an aromatase inhibitor (such as arimidex).  In one study, aromatase inhibitors were found to offer greater benefit than tamoxifen in POSTmenopausal women.  This is an important distinction because aromatase inhibitors cannot be used in PREmenopausal women.

[carme]

I don't know what causes your cysts, but I had a total hysterectomy 1 year after bilateral mastectomies, because my mother died of ovarian cancer and we have the BRCA2 mutation.  I am 52. I have no sex drive, have to really work myself up for it, and have killer hot flashes. So my oncologist lets me take 1/2 of a 0.3 mg Premarin daily. Sometimes I stretch it out to 36 hrs between doses. My breast cancer if you can call it that, was a stage zero because it was lobular/intraepithlial. It's tough with so little estrogen, but it's better to be alive. That's why I chose total mastectomies after watching cancer come back in my aunts who opted for lumpectomies. My mother had radical mastectomies 13 years apart,and the ovarian cancer did not show up for 11 years after. My younger sister had bilateral too, she had stage 3 though. She has not had her ovaries removed...she's taking a chance, maybe because she's newly married. Research everything, ask lots of questions, because they don't really offer a lot of advice up front. There are a whole lot of things that aren't talked about much...

[paulin]

Thanks for your response.  Are you on Tamoxifen or Arimidex?  Also what other side effects have you experienced having no ovaries and is it different because you had a total hysterectomy? Doctors keep avoiding or telling me that the side effects are no big deal and there are things to help, but already having breast cancer I know things are tricky in the hormone department. Hope you are doing well. Thanks!

[paulin]

Thank you for your information it was helpful!

[carme]

I took Tamoxifen in a trial for a few years...until I could not stand the side effects of swelling/edema.  The night sweats continued, I still had a regular period during the trial. I quit the drug and did not have my "cancer" until almost 5 years later. The genetic doctor said he was pretty sure the tamoxifen helped keep the cancer away for awhile. My mother took tamoxifen for 5 years, cancer returned in her ovaries 11 years after her last breast cancer. She was also 80 years old.  My younger sister was diagnosed at 47, she did not do the trial. I was diagnosed at 49. It's been a year since the hysterectomy. My anxieties are less, my sex drive is less, being hungry is common, weird skin breakouts, dry skin. I have been running, walking, working out for 9 years to keep strong and try to keep heart disease, bone loss, diabetes at bay. I know you have to work at that, so I started doing this before any of these surgeries ever came up. In the end, it's you who makes the choices.  I choose life.
Good luck...God Bless.

[ritavv]

I was 50 and had a similar response to Tamoxifen.  I developed ovarian cysts and my estradiol stayed high.  My oncologist felt the high estradiol was competing with the Tamoxifen and recommended either surgical or chemical removal of the ovaries.  I chose chemical (Lupron) because I figured I was so close to menopause, why undergo surgery.  After a year of Lupron shots I stopped them only to see the cysts return and my estradiol shoot back up.  I went back on the Lupron for another year.  This time when I stopped, my estradiol levels stayed low.  I thought I'd made a great decision... until the Tamoxifen started causing uterine bleeding.  I wanted a hyterectomy and my gynecologist said it was unnecessary.  I couldn't switch to Arimidex until I was SURE that I was in menopause so I went through a lot of stress with the uterine bleeding (not to mention the hassle).  At that point, I wished I'd had the surgery to remove the ovaries and been done with it.  Whether you have the surgery or use a chemical like Lupron, it DOES affect the libido.  I have worked hard to keep what I have.  Good luck on your decision.

[paulin]

Thanks for your response all the information I can get helps in my decision making.  I was told yesterday that my estrogen level went from 816 to 38 which is quite a drop.  But with all this fluctuation is the Tamoxifen working as well as it should?  Why did you pick Lupron?  And why would you switch to Arimidex.  My doctor told me yesterday that if I have my ovaries removed, I can still stay on Tamoxifen, switch to Arimidex or possibly take both (if I understood her correctly).  What have you heard about one Vs the other once in Menopause?  Did you end up having surgery?  My other choice is to wait 6 weeks to see if cysts go away, just concerned about the complex cyst.

Thanks!

[ritavv]

>>I was told yesterday that my estrogen level went from 816 to 38 which is quite a drop. But with all this fluctuation is the Tamoxifen working as well as it should? <<
I assume once the estrogen level dropped, the Tamoxifen is working just fine.  Mine never dropped after 5 months of Tamoxifen.

>>Why did you pick Lupron? <<
That is what my doctor recommended. I was very lucky.  It normally comes with a lot of hot flashes... I had only one.

>>And why would you switch to Arimidex. My doctor told me yesterday that if I have my ovaries removed, I can still stay on Tamoxifen, switch to Arimidex or possibly take both (if I understood her correctly). What have you heard about one Vs the other once in Menopause? <<
I switched because Tamoxifen can cause a thickening of the lining of the uterus (as in my case) where as Arimidex works differently by eliminating the production of estrogen.  My understanding is that recent studies show the aromatase inhibitors like Arimidex are more successful that Tamoxifen.  However, there is a lot of long term usage data on Tamoxifen so many doctors prefer to keep their patients using it.  Besides, it doesn't have the possible osteoporosis side effect.

>>Did you end up having surgery? <<  
Just a D&C.  I still have my ovaries and uterus.

[paulin]

Thanks for all your information.  How often did you have to have your estrogen levels checked while you were on Tamoxifen, and did they fluctuate alot?  Have you had any muscle or joint pain while on Arimidex?  If Tamoxifen blocks the estrogen and Arimidex stops estrogen production, does Arimidex also block the estrogen from binding like Tamoxifen?  I'm having a hard time understanding.  Since after menopause your estrogen production drops to almost nothing, why would you take something like Arimidex instead of Tamoxifen that actually stops the estrogen from binding to your cells.

Thanks for your comments!