Ovaries and Tubes Removed While on Tamoxifen?

Kristin N

I have read on another board where a lot of women seem to have their ovaries and tubes removed after they are on Tamoxifen. And, they say Tamoxifen can cause uterine cancer. Is a hysterectomy something anyone here has done as a result of Tamoxifen or as a precaution? I am just trying to get some answers from real, live people, not just data on a computer. Thanks!

Jeanne D

I have also read on another
I have also read on another site where a lot of the women that are on Tamoxifen have ended up having hysterectomy's. I also have read where some even get the uterine cancer that they say is so rare. Danged if you do and Danged if you don't! I may just pass on the Tamoxifen. I kind of doubt it reallly adds much to your life expectancy or recurrence. After all, I got diagnosed with this NEW cancer 23 years after my first cancer and I never took Tamoxifen. So, if I can get another 23 years without Tamoxifen...I will be happy!

Ltalcott

ophorectomy
If I had the BRCA gene, removing my ovaries would have been my next step in treatment. I have a strong family history of both breast cancer and ovarian cancer.

But I was negative for the gene.

In spite of that, having an ophorectomy actually came up in the conversation with my oncologist today, and she's referring me to the gyn-onc doc. I am 53, but not yet post-menopausal, according to lab work. The AI's have better results than tamoxifen, but you have to be post-menopausal.

And I am scared of ovarian cancer--with such vague symptoms that it's seldom diagnosised early.

There are risks to any surgical proceedure, even a laproscopic opherectomy. (Don't even know if a spell-check would have those!) But....

I have no idea on the tubes--no one has said anything about doing a hysterectomy. (I had endrometiral ablation almost three years ago for heavy bleeding--they fried the inside of the uterus. I haven't had any bleeding at all since then, but I still have monthly cycles--tender breasts--ha, ha, back when I had them. That's why my menopausal status isn't clear.)

Lisa

cabbott

further surgery
A long time ago(well, maybe a bit more than a decade or so ago anyhow which is long time the way medicine changes) doctors could only reduce the amount of hormones that fueled breast cancer by removing parts of a woman's body including her ovaries, andrenal glands, among other things. Then came tamoxifen and after that the aromatase inhibitors. After tons of research, doctors found that tamoxifen worked as well on premenapausal women as surgery to removal glands that produced hormones. Also, research showed that adding oopherectomy (removing the ovaries) to tamoxifen didn't improve survival unless the woman was likely to develop ovarian cancer. Folks that are BRCA positive (this is less that 10% of those of us with breast cancer) need to seriously consider an oopherectomy because ovarian cancer is nasty and hard to detect. However, the oopherectomy is not without consequences in and of itself. You go into immediate menapause and the bone loss and hot flashes are worse with surgical menapause. The aromatase inhibitors work only after the ovaries stop working, but they are twice as effective as tamoxifen at reducing occurance and increasing life span. If you are very very high risk for reoccurance and need the protection aromatase inhibitors give, an oopherectomy or medicines to shut off your ovaries temporarily will make it so you can take them even if you were premenapausal when you were diagnosed. Sure, this comes with lots of hot flashes and probable bone loss, but if your prognosis is not good it may be worth it. If your prognosis is fairly good, you might want to stick with the tamoxifen if premenpausal and the aromatase inhibitors if post-menapausal. An added oopherectomy is not standard of care for woman who are not at high risk for ovarian problems if they can take tamoxifen or the new drugs.

It is true that tamoxifen is listed as a cancer causer because it can promote uterine cancer. My oncologist said that if symptoms of uterine cancer developed, it should be easy enough to take care of with a hysterectomy. He also pointed out that tamoxifen seemed to cause cancer more in older women. At the time I was in my mid-forties. That felt old to me, but he meant over 70.

I had no problem deciding to take tamoxifen after reviewing the research on how effective it was and how few side effects it really has compared with chemo or surgical alternatives. Unfortunately one other rare side effect of tamoxifen is the possible development of stubborn ovarian cysts. This happens to something like one out of a hundred women who take tamoxifen. Maybe less even. Yours truly managed to get some whoppers that just didn't resolve in a timely manner. After undergoing too many tests (ultrasounds that they do from the inside, not on your belly like for pregnancy and more pelvic exams than I had with pregnancy as well), I finally opted for the total hysterectomy and oopherectomy. Guess what? I didn't have anything wrong at all. Just stubborn cysts. They can't tell without looking at stuff under a microscope and of course they didn't put anything back after they found out it was all normal. So I've experienced plenty of hot flashes and yes, some unfortunate bone loss in spite of regular exercise and a calcium-rich diet. I know it was necessary given what was happening to me with the stubborn cysts that could have been cancer. We needed to find out if the lump on my ovary was normal. But I never would have had that surgery if I had known that things were okay for sure. All surgery has side effects. Surgical menapause is different from just a hysterectomy with lots more side effects because of the total loss of estrogen. It had the beneficial side effect of making it so I could go on the aromatase inhibitors. I quit having PMS headaches and it is rather nice to go to the beach and know I won't get "surprised" by a monthly visitor. I'm glad that it helps my probability of living a longer life. But there are definate negatives as well: diminished lubrication, dry skin, bone loss, more scars and areas of numbness that I wasn't born with. So think about it before you jump into surgery if that is what you are considering. There are reasons why doctors and women celebrated the discovery of tamoxifen and later the aromatase inhibitors and why they have become standard of care without the addition of oopherectomies for most women (the BRCA folks not included). I'm sure you will make the right decision for you. Good luck!

C. Abbott

Christmas Girl

cabbott said:

further surgery
A long time ago(well, maybe a bit more than a decade or so ago anyhow which is long time the way medicine changes) doctors could only reduce the amount of hormones that fueled breast cancer by removing parts of a woman's body including her ovaries, andrenal glands, among other things. Then came tamoxifen and after that the aromatase inhibitors. After tons of research, doctors found that tamoxifen worked as well on premenapausal women as surgery to removal glands that produced hormones. Also, research showed that adding oopherectomy (removing the ovaries) to tamoxifen didn't improve survival unless the woman was likely to develop ovarian cancer. Folks that are BRCA positive (this is less that 10% of those of us with breast cancer) need to seriously consider an oopherectomy because ovarian cancer is nasty and hard to detect. However, the oopherectomy is not without consequences in and of itself. You go into immediate menapause and the bone loss and hot flashes are worse with surgical menapause. The aromatase inhibitors work only after the ovaries stop working, but they are twice as effective as tamoxifen at reducing occurance and increasing life span. If you are very very high risk for reoccurance and need the protection aromatase inhibitors give, an oopherectomy or medicines to shut off your ovaries temporarily will make it so you can take them even if you were premenapausal when you were diagnosed. Sure, this comes with lots of hot flashes and probable bone loss, but if your prognosis is not good it may be worth it. If your prognosis is fairly good, you might want to stick with the tamoxifen if premenpausal and the aromatase inhibitors if post-menapausal. An added oopherectomy is not standard of care for woman who are not at high risk for ovarian problems if they can take tamoxifen or the new drugs.

It is true that tamoxifen is listed as a cancer causer because it can promote uterine cancer. My oncologist said that if symptoms of uterine cancer developed, it should be easy enough to take care of with a hysterectomy. He also pointed out that tamoxifen seemed to cause cancer more in older women. At the time I was in my mid-forties. That felt old to me, but he meant over 70.

I had no problem deciding to take tamoxifen after reviewing the research on how effective it was and how few side effects it really has compared with chemo or surgical alternatives. Unfortunately one other rare side effect of tamoxifen is the possible development of stubborn ovarian cysts. This happens to something like one out of a hundred women who take tamoxifen. Maybe less even. Yours truly managed to get some whoppers that just didn't resolve in a timely manner. After undergoing too many tests (ultrasounds that they do from the inside, not on your belly like for pregnancy and more pelvic exams than I had with pregnancy as well), I finally opted for the total hysterectomy and oopherectomy. Guess what? I didn't have anything wrong at all. Just stubborn cysts. They can't tell without looking at stuff under a microscope and of course they didn't put anything back after they found out it was all normal. So I've experienced plenty of hot flashes and yes, some unfortunate bone loss in spite of regular exercise and a calcium-rich diet. I know it was necessary given what was happening to me with the stubborn cysts that could have been cancer. We needed to find out if the lump on my ovary was normal. But I never would have had that surgery if I had known that things were okay for sure. All surgery has side effects. Surgical menapause is different from just a hysterectomy with lots more side effects because of the total loss of estrogen. It had the beneficial side effect of making it so I could go on the aromatase inhibitors. I quit having PMS headaches and it is rather nice to go to the beach and know I won't get "surprised" by a monthly visitor. I'm glad that it helps my probability of living a longer life. But there are definate negatives as well: diminished lubrication, dry skin, bone loss, more scars and areas of numbness that I wasn't born with. So think about it before you jump into surgery if that is what you are considering. There are reasons why doctors and women celebrated the discovery of tamoxifen and later the aromatase inhibitors and why they have become standard of care without the addition of oopherectomies for most women (the BRCA folks not included). I'm sure you will make the right decision for you. Good luck!

C. Abbott

Thank you, C. Abbott
Wow. I'm so grateful for the additional knowledge you shared above. Thank you. And, thank you for putting it into "layman's terms"...

Kindest regards, Susan

NorcalJ

Christmas Girl said:

Thank you, C. Abbott
Wow. I'm so grateful for the additional knowledge you shared above. Thank you. And, thank you for putting it into "layman's terms"...

Kindest regards, Susan

hysterectomies
Hi Susan,

Funny that you should post this today. Tomorrow, I'm having a laproscopic hysterectomy. BUT, my situation is totally different than you're asking about.

I was diagnosed with BC last year, had a mastectomy, chemo and rads. Then, I had the BRCA test and came up positive. Since I was already postmenopausal at diagnosis, I was put on an AI. I decided to go the whole route(hsterectomy vs. oophrectomy) because I'm post menopausal, and basically, don't need those parts anymore.

I would think that many of the people you've heard about that had hysterectomies or just oophrectomies were perhaps BRCA positive, so had the surgery for more than the reason of the side effects of tamoxifen.

Everyone is different, and not every Dr. agrees with every other Dr., so you have to decide what is right for you. Sounds like you're doing a lot of good research. Most of us, deep down, know what feels like the right advice. If you're not sure---keep asking, and get a second, third, (or even more) opinion.

Good luck.