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Anyone out there had their ovaries taken out

Balentine's picture
Balentine
Posts: 393
Joined: Feb 2010

Just got back in town today from the road trip to St. Louis and back....wow...my back hurts :) but had a great time with my husbands family.

Wanted to ask....has anyone had their ovaries removed? That is what the new onc is advising and then taken arimidex or femara after that. I am not sure I will be willing to take any of these drugs the way I feel right now but I am considering having my ovaries out since my bc was almost 100% estrogen fed and the onc said taking my ovaries out will stop the estrogen production. Anyone out there have any info on this for me?
Lorrie

RE's picture
RE
Posts: 4606
Joined: Feb 2004

I lost my mom to ovarian cancer that was a result of mast breast cancer after she had beat it 4times. I choose to have a complete hysterectomy to take that threat off the table and I have no regrets.

Balentine's picture
Balentine
Posts: 393
Joined: Feb 2010

I am not having to have a full hysterectomy....just ovaries out....I am wondering how invasive this is and how it is done....also if this will stop the estrogen production. I guess I don't understand why you have to take post menopausal arimidex and femara...if you are post menopausal doesn't that mean your ovaries are no longer producing estrogen or just that your periods have stopped? Does the arimidex and femara also kill the estrogen production like the tamoxifen?
Lorrie

Scotch Freckles's picture
Scotch Freckles
Posts: 273
Joined: Apr 2010

I lost my ovaries in '88 (hysterectomy/oopherectomy), went on hormone replacement which turned out to be main contributor to my bc. I was told I could never have any type of hormone replacements again since my bc was estrogen fed. But, your body produces natural estrogen to some extent. I would say a good talk with an OB/GYN on this question would help you with your question, and ease your confusion.
Kathryn

New Flower
Posts: 3914
Joined: Aug 2009

both ovaries and glands. You body will still produce estrogen even you remove your ovaries. If you want to block estrogen production you need to use combination of surgery and medication.

Balentine's picture
Balentine
Posts: 393
Joined: Feb 2010

I am curious why did you have to have your ovaries out in '88? And how did this and the hormone therapy contribute to your bc?? Seems crazy that they tell us to do something that is supposed to help prevent bc and it actually helped to cause yours....mmmmm....it gets more and more confusing to me.
Lorrie

lolad's picture
lolad
Posts: 671
Joined: Jun 2009

having the ovaries removed, like i did, reduces the estrogen produced in your body. The ovaries produce the estrogen into your body. You will still carry some estrogen after having the ovaries removed, but its not nearly as much. I just had a total hysterectomy because of three tumors that were found. The procedure was done robotic laproscopic and was not real invasive at all. I recovered pretty quickly too. I think most types of hysterectomies are done some kind of laproscopic way now. You still need to be on some type of hormone to block the estrogen in your body that will still be there. They say its to reduce the chances of your breast cancer reocurrence especially if like in your case your tumor was hormone fed. I was at 100% estrogen and progesteron positive for my tumor and still even after the hysterectomy am on a hormone. They will be changing it from tamoxifen to a post menopausal hormone now. Hope this helps.
Take care
Laura

Double Whammy's picture
Double Whammy
Posts: 2259
Joined: Jun 2010

Mine just came out July 1, but I don't really count because this was all part of the hysterectomy for my endometrial cancer. My breast cancer is estrogen receptive and I, too, will be given aromatase therapy (either arimidex or femera).

I'm curious why they're not also suggesting a hysterectomy if they want to do a bilateral oophorectomy. I know, I know, why remove healthy organs, but . . . "They" say there is no relationship between breast and endometrial cancers (unless you're taking Tamoxifen) but I have encountered many individuals on the HysterSisters group who have had both. And, of course, I got both at the same time. No relationship? - Just the same risk factors? Hmmmmmm. I'm postmenopausal and I'm actually glad my ovaries are gone. Of course, I really had no choice.

You will continue to produce estradiol via your adrenal glands and this gets converted to estrogen, hence the need for aromatase therapy. Losing the ovaries alone doesn't do it all.

Suzanne

Balentine's picture
Balentine
Posts: 393
Joined: Feb 2010

It is a hard decision to make....I will talk to my gyn doctor about this. I really do not want to do any hormone therapy and I will see how invasive this surgery is before deciding what to do about that also. I believe I am more concerned with my quality of life than anything else. I know it sounds strange to some of my sisters here but I may just take a chance and not do anything else but diet and exercise.
Lorrie

cabbott
Posts: 1046
Joined: Aug 2006

Estrogen is produced by the ovaries in large quantity. Your body fat also produces estrogen, but in smaller quantities. That's why removing the ovaries reduces the estrogen alot but not all the way. The aromatase inhibitors work to reduce the estrogen your body fat produces, but that won't help if your ovaries are still functioning.

Tamoxifen was touted as a huge step forward in cancer control because taking it when you are premenapausal was JUST as effective as having surgery to remove your ovaries. That said, tamoxifen can promote uterine cancer and some women are not genetically responsive to tamoxifen. But most women can take it and get great results. There is a genetic test to determine how likely you are to get great results. Tamoxifen works very differently from aromatase inhibitors. Tamoxifen fills the spaces where estrogen would go to fuel cell growth. Tamoxifen is like watered down gasoline. You put watered down gasoline in a car engine and the engine stops. You put tamoxifen into the cell receptors and cell growth stops. That works to cut your cancer reoccurance rate in half. This is much better than just diet and exercise. And the uterine cancer is usually more likely if you are over 65, has symptoms like bleeding before it gets nasty, and is removable with hysterectomy.

Yes, there are risks, but you need to know that removing your ovaries has risks too. The surgery is not so bad, but the hot flashes are intense. Sudden loss of estrogen is hard on bones (you may be able to take a bone builder like fosamax to counteract this), and you shouldn't take hormones or herbal remedies for the flashes since your cancer is hormone controlled.

Taking tamoxifen for 3 years followed by aromatase inhibors for 5 is a researched plan of action with great results. In 3 years your ovaries will be closer to shutting down naturally. You can take a blood test to determine if they are stopped or on the way. Then your entrance into menapause is a little easier and just perhaps the surgery can be avoided. That's just one plan to consider. If you have extremely aggressive cancer, you may prefer surgery and then hitting the cancer hard with the aromatase inhibitors. That is 50% more effective than Tamoxifen, but know what that means.

If your chance of no reoccurance is 90%, then your chance of reoccurance is 10%. Take tamoxifen and if you are responsive, your chance of reoccurance is now 5% and your chance of no reoccurance is 95%. Take the surgery and aromatase inhibitors and your chance of no reoccurance is 97.5%. You never get to 100% sure. Is it worth the surgery? Is it worth the side effects. You have to decide. On the other hand, if your cancer is aggressive and your chance of no reoccurance is 50%, then Tamoxifen gets you to 75% and the surgery and aromatase inhibitor gets you to about 87%. Those odds are much better so the decision may be weighted on the side of more aggressive surgery and drug treatment.

Exercise and diet in your teens does seem to have a positive effect on cancer development in your 40's. The effect after you have been diagnosed is not so great. You will live much better and have less heart attacks, great mobility, and a better chance of weathering what the doctors throw at you if you eat right and exercise (which may help you live longer...), but the research isn't showing that those two things halt cancer development once it has taken root. This hasn't stopped me from eating right and exercising daily. Of the two, exercise is showing more positive effects.

Laproscopic surgery to remove ovaries is day surgery in many areas. Oopherectomy lowers your risk of ovarian cancer significantly (though not totally to zero). Some women are genetically likely to get both breast and ovarian cancer. They should definately consider getting their ovaries out as soon as they have finished having children to lower their risk of cancer. There is a genetic test for this. Only about 10% of women with breast cancer have a known genetic cause. If there is a lot of breast cancer, ovarian cancer, or early prostrate cancer in your family tree, you may be at risk.

A second opinion from the best oncologist you can travel to (preferably one attached to a university teaching hospital with a great breast clinic) is a great way to make the best plan for you. Good luck!

PS Gynocologists are often the ones that diagnose ovaraian cancer. They take out ovaries as part of their speciality. So they are often pro-surgery when it comes to cancer control. Years ago taking out ovaries (and many other glands) was the only way to give breast cancer patients a few more years. Then came the tamoxifen and a change in treatment plans. Gyn's are not breast cancer specialists. If they have been out of med school for ten or more years, they may have strong leanings toward surgery that are not necessarily gold standard treatment for breast cancer. Again, consider getting a breast oncologist to review what ups your odds the best and how necessary various treatments are.

Bella Luna's picture
Bella Luna
Posts: 1569
Joined: Aug 2009

Cabbot... thank you for sharing your knowledge with us. You did a great job explaining medical scenarios. I have finished with treatment(chemo, rads) and am on tamoxifen. I am moving forward.

Best of luck to you on your journey.
BL

survivorbc09
Posts: 4378
Joined: Jun 2009

Thanks cabbott for your post! Very informative!

Jan

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

Thank you, Cabbott.

There are pro's on taking out the ovaries, but there are also some cons. Cabbott mentioned the bone loss associated with them out. But there are also higher risks of stroke and heart disease related with taking them out.

It's not so simple.

Each one of us need to consider our own histories and genetics before taking them out.

DebbyM's picture
DebbyM
Posts: 3295
Joined: Oct 2009

I didn't have my ovaries out, and, your body will still produce estrogen Lorrie even with your ovaries removed, just not from them. Good luck!

Hugs, Debby

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

I still have my ovaries Lorrie. The posts here are loaded with information!

Thanks for sharing!

Hugs, Diane

Christine Louise
Posts: 429
Joined: Feb 2010

Lorrie, I will get ovaries and uterus out Aug.4, for the estrogen-production reasons others have said here.

Also, I haven't had the BRCA gene mutation test, but we're assuming my bc is inherited (big family history of bc). So, although I don't officially have Breast and Ovarian Cancer Syndrome, I want the ovaries out to get rid of my chances for ovarian cancer.

My onc says if only ovaries are removed, some ovarian tissue is left behind in the area where ovaries connect to uterus. We want it all gone.

I'm also dreading the Tamoxifen I'll take for 2 years before switching to Arimidex. But, I'm fighting the bc with everything possible, so I'm planning on taking it.

waffle8
Posts: 232
Joined: Mar 2010

Hey Lorrie I know you will be praying and seek the best possible solution for you....You got some great info. posted on here...I think it is the pits can't seem to keep that estrogen down..I still need to have that test done for tamoxifen but will be seeing my ob/gyn tommorrow about the ovaries....My big problem is what to do about actual birth control....Just another chapter in this bc fight....
Blessings

Balentine's picture
Balentine
Posts: 393
Joined: Feb 2010

If I was an excellent metabolizer of tamoxifen, then I would probably take it. Due to the fact that I am a poor metabolizer, I refuse to take it. I will talk to my gyn about taking my ovaries out, but honestly after reading about the side effects and chances of any of my options, I lean toward doing nothing. Reason being that my quality of life is most important to me. In the end, each of us has to make the decision that is right for us and no one else can do that. The more I hear from others who have done each option and the more I research, the more I am apt to let the cards fall where they may and trust God. I know that sounds pretty radical but that is just my feeling. My breast cancer was caught very early. Although it was IDC, it was stage one and no lymph nodes involved. My chances are in the 90% range even if I do nothing else.
Lorrie

carkris's picture
carkris
Posts: 4505
Joined: Aug 2009

I think scotch freckles is referring to hormone replacement that could have contributed to her type of breast cancer. I take tamoxifen and I dreaded it and it isnt a big deal. not nearly as bad as I thought. However my doc does not advocate the metaboizer test and I plan to revisit this next month. My feeling is I should have my ovaries removed and go on an aromitase inhibitor if tamoxifen wont work for me. But my idea is that the oopphorectomy would put me in (for sure) menopause. I know it would also decrease the estrogen also. but you cant go on an aromotase inhibitor until you are in menopause and I dont think blood work is that reliable as everything flutuates so much. For those of us who's periods have stopped due to chemo there is no way to tell. so the rule of thumb is 2 years. But Balentine brought up the valid point that if you dont metabolize it, why take it? I just dont know enough about this test and how reliable it is but plan to find out.
I am also going to take zometa IV twice a year to prevent recurrrance. This is a result of a new study tht shows to decrease recurrance by almost 40 percent. not just bone but all kinds.

Sally5
Posts: 86
Joined: Jun 2010

Balentine,

Sorry to hear you are having a tough time making decisions. I think this is the hardest thing about this disease. Facing decisions and the unknown. You are doing the right thing by trying to get more information.

I just started taking tamoxifen. I, too, am worried about the side effects. I was told to watch for abdominal pain and heavy bleeding... I had this before taking tamoxifen ..... so how do I know. My gynocologist suggested an IUD called Mirena. (It could help stop my periods). My oncologist thought this was okay, too. Still not sure. Have you heard of this?

I feel like I am trying to get one cancer under control and I am opening myself up to other risks....... I thought it would be recommended to have a hysterectomy but it has not.

Cabbott - wow.... Thanks for all the new knowledge.

Balentine's picture
Balentine
Posts: 393
Joined: Feb 2010

It is like playing Russian Roulet isn'nt it??? This is why I give this to God in prayer and ask Him to lead me and direct my steps in this process....what is right for one person just may not be right for the next which makes this very difficult for doctors and patients to make a proper and informed decision.

After much research, I am more and more convinced that it is a matter of our immune system and genes more than anything else we ever can do or take to help us. I can do everything the right way but if my immune system is just not strong enough to fight off the cancer cells then it is still inevitable that I will get a recurrence no matter what I do. That is why I strongly believe that diet and exercise are so important for our immune systems. Things that feed cancer like sugar should be avoided or drastically reduced in our diets and things like asparagus, brocolli, vitamin D3, etc. which boost our immune systems should be added and eaten the majority of the week.

In the end ladies, our lives are not our own....they are in God's hands....the same hands that hold the world and bring us a new sunrise each day....I know I can trust Him with my life and when this is all over I know I will be in a place with no more pain, sorrow, disease, evil, nor crying or confusion. We will have no more questions for we then will know all things full and complete just as God does. He will wipe every tear from my eyes and my joy will be fulfilled and remain always. Be blessed in Him.

Lorrie

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Yes, thanks Cabbott for all of that information! Appreciate it.

No, I didn't have my ovaries out. It is confusing as to what to do.

That is why we just have to do what we feel is best for us.

Good luck to you Lorrie in whatever you might decide.

jnl's picture
jnl
Posts: 3873
Joined: May 2009

I will be praying for you too Lorrie that you make the best decision for you!

Hugs, Leeza

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