Need suggestion to remove or not to remove ovaries.

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lovujja
lovujja Member Posts: 119
edited June 2014 in Stage III Breast Cancer

Hi ladies,

Your suggestions and posts have been wonderful to live post BC cancer life. I am 42 years old and  had losts of Ln positive with grade 1. I had chemo, bilateral mastectomy and radiation. I am takin Tamoxifen 20 mg daily. It will be 1 year post active treatment in this July. I have 5 and 6 years old two little children and have no plan to have more. I am thinking to remove ovaries some time in this winter to prevent reoccurence. Before i make a decision i love to hear from other survivars who have done it. I am some how worried with unknown.

Thanks.

Lovujja

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited June 2013

    Lovujja, you're sure to hear from other members sharing their own experiences, and in the meantime the main Breastcancer.org site has a section that may be helpful as you consider your decision. The section Prophylactic Ovary Removal includes articles about what it is, if it's right for you, what to expect, risks and alternatives, and questions to ask your surgeon - just look at the links down the left side from the main page.

    Best wishes,

    • The Mods

  • Natlie38
    Natlie38 Member Posts: 39
    edited June 2013

    Hi Lovujja, I had my ovaries removed and am on Letrozole now. 

    Hot flashes are the worse side effects for me so far. But I am BRCA2 positive too.

  • TarheelMichelle
    TarheelMichelle Member Posts: 871
    edited June 2013

    Removing your ovaries will not definitely prevent a recurrence. I have kept my ovaries because I prefer to keep body parts that are working just fine. There may be a time in the future when the estrogen they produce may actually help treat my cancer (basing this on new bc treatments being developed). And doctors can't seem to explain (to my satisfaction, anyway) if ovary removal is such a good idea, why do some women have a recurrence afterward. The adrenal glands may ramp up estrogen production to compensate for the ovary removal. You have done a LOT already to prevent a recurrence, which I hope eases your mind. Doing more could damage your quality of life.

  • Momine
    Momine Member Posts: 7,859
    edited June 2013

    Lovujja, I would urge you to talk to 2-3 docs about this. You are quite young to yank out the ovaries.

    I had mine out, BUT: I was 48 and going into menopause anyway; my mother had ovarian cancer 6 years ago; my mother's sister had breast and uterine cancer 3 years ago; my cancer was stage 3 and lobular, which "likes" the ovaries; and, finally, I was really not digging the tamox and preferred going on an AI (which is also more effective against lobular).

    In addition we have no family history of either heart disease or dementia, but we do have an extensive history of cancer on both sides. So the chances that my cancer has a hereditary component are really high, although my mom and her sister are negative for BRCA. I figured that with this constellation of factors, I was better off getting rid of my estrogen factory. In addition I had some huge fibroids on my uterus, so we took that too, but left the "neck," to support my internal organs and hopefully prevent any prolapse problems.

    So, a year and a bit ago, I was hurled into surgical menopause, augmented with letrozole. It was odd, lemme tell ya. For quite a while, it felt like the entire system was dead (yes, I am talking sexual health here). However, it is coming back. You basically have to retrain your body, and it can be done.

  • TectonicShift
    TectonicShift Member Posts: 752
    edited October 2014

    My doctor recommends removal. But I am post meno. I don't want to worry about ovarian cancer. 

  • lovujja
    lovujja Member Posts: 119
    edited June 2013

    Thank you all for your response. I don't have family history of cancer and i am not positive for BRCA 1 or 2.  I am ER- 75%, PR -55% positive. I want to get sense of quality of life after wards, you can't put it back when it is out.

    I can read hundred articles and research papers but those don't match with what you ladies who have surgery can tell me.  so please share.

    Thanks. 

    Lovujja

  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2013

    I had a total hyst/ooph 9 years before I was diagnosed with BC due to numerous large fibroids.  Post-op pathology revealed a 3cm pre-malignant mass in the right ovary that was undiagnosed, so it was the right choice, but not without consequences.  I was somewhat relieved that when I was diagnosed with BC I did not have to worry about ovarian cancer also.  I was 45 at the time of the surgery and I will honestly say there can be some serious side effects from having surgical menopause.  My cholesterol level went from 155 to 260 in a fairly short period of time with no change in my fairly healthy diet, so I was put on a statin. I just stopped taking it recently because I was finally able to get my ratio in better balance with diet and exercise. I became osteopenic, which is causing issues now because aromatase inhibitors cause bone loss, so I have to take yet another drug to try to deal with that.  These are two very common issues that occur when you remove the ovaries before the body goes through menopause naturally.  I cannot have a PAP smear any longer because the possibility of tearing that tissue, it has become very fragile.  That should give you some indication of what sexual activity is like also!  Think carefully about this before you do it, and keep gathering information.

  • lightandwind
    lightandwind Member Posts: 754
    edited June 2013

    I wanted to chime in on this thread too. I was diagnosed a little over a year ago at age 43 (premen). I was stage III, grade 3, ER 96% and PR 96%. I chose no chemo and the only sane alternative to that according to my onc and other docs was to have an ooph w/ mx on same day to what they called "remove the fuel" and "burn down the factory to stop the production". I had looked at some studies that had discussed that this approach was as effective or maybe even more than chemo for hormone+ cancers. I was clearly estogen dominant..had heavy periods and uterine fibroids. I followed the advice as I saw it as the best option for me. I had the mx and ooph during the same surgery. I was put on femara only 1 week following the surgery to get to stray cells as quickly as possible. My tumor markers leveled off and are currently still w/n normal range. For months following this surgery during and on femara, it was real tough. I couldn't think straight, walk straight, i was depressed and uncomfortable in my body. As time passed though, I've gotten more comfortable in my body, and now feel better than I did for years prior to diagnosis (despite the daily downer from the femara-sore joints, etc). I no longer have inflammation, chronic fluid retention, and feel more level and grounded emotionally and mentally.  I truly get now why estogen dominance is such a bad thing for breasts and all of the other body's functions. Had I been younger, not as high % on the hormone +, then I might have not seen the benefits that I have had so far. Since I was nearing meno and having all the problems from estogen dominance anyway, I don't regret my choice at all. AND it might have saved my life (at least for a while). I do think that in the very near future, we are going to know more about BC and how to control and balance hormones to prevent disease which will help to allow women to go through natural meno without having to make this grueling decision. Best to you whatever your choice!

  • karen1956
    karen1956 Member Posts: 6,503
    edited June 2013

    I had an ooph as part of my Tx protocol...I was 50 at the time and perimenopausal...it was tough, being thrown into menopause, but I would do it again....it is one less thing for me to wrry about......

  • kar123
    kar123 Member Posts: 273
    edited June 2013

    I was 40 when diagnosed and my gyno recommended to have my ovaries out for a few reasons.  I had a large cyst on one of the ovaries, my cancer was highly estrogen positive, I didn't know my BRCA status and my mom was adopted, so I don't know her family history, finally I wanted to use the AI's instead of tamoxifen.  Also, one less cancer to worry about seeing as how I was so lucky to be in the 10%.

  • lovujja
    lovujja Member Posts: 119
    edited June 2013

    Thanks to all who have been able to response. I will complete one year from active treatment. I am still  feeling like i have a new body and i need to know well. Some how things start to get better. I feel it imight be good prognosis wise to remove my ovaries but i am so worried about quality of life or and unknowns. Having two little one at home you have to think a lot before making any decision. Seems a lot of women are doing better after one year of surgery. May be i should wait one more year, by then my kids will be 7 and 6 yrs old and it will be easier for my husnand to manage.

    Again, Thank you very much for your repply.

  • chrishat
    chrishat Member Posts: 89
    edited July 2013

    i had the prophylactic oopherectomy at age 44, i can say that the operation itself was a piece of cake. i was 97% er and pr + and it just made deep internal sense to me to do it. i wouldn't have rested otherwise. i also wanted to take arimidex rather than tamoxifen. first year afterward, TONS of hot flashes, but at three years out those are mostly gone. the aches and pains from arimidex are still there but have subsided as well. i would say my libido has suffered significantly, although all my parts still work, drive is way down. my husband is patient and we are working on that! for me, i have no regrets at all about having had the surgery. it felt, to me, like a really important part of my cancer treatment. even though i have had side effects, i truly feel like i was taking action to save my life. of course, there are no guarantees and it is a very individual decision! but given my highly er pr + status, i would have been a walking bundle of total paranoia about any and all estrogen had i not done it. good luck with your decision. cancer sure does force us to make decisions we shouldnt even have to consider!

  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited July 2013

    I also had made the decision to get the ovaries removed. Was already in meno because of the chemo. Easy surgery, 2 small incisions one in belly button. Vaginal dryness, yes! Low sex drive Yes! But I was highly er/pr+ so to me was worth it if it keeps bc at bay. I am also on arimidex now instead of tamoxifen. Hot flashes are starting to subside finally and thankfully... yeesh, those are the worst!! You will make the best decision for you, hang in there!!

  • lovujja
    lovujja Member Posts: 119
    edited July 2013

    Thank you CherylinOhio  and chrishat

    for sharing. I am still wighing on pros and cons of the procedure. After you remove it no way you can put it back.

    After chemo when Mayo did a test i wasn't strong ER, PR +ve. I don't know why it changed after chemo. I have been talking to my Onco and he is positive that it will benefit me. Let's see.

  • sherry67
    sherry67 Member Posts: 556
    edited July 2013

    Lovujji,

    I had my ovaries removed last aug..90 %ER+....

  • lola12
    lola12 Member Posts: 127
    edited July 2013

    I removed my ovaries due to the fact that I wanted to be on an AI and could not unless I was postmenopausal. I didnt plan on having any other children, so it was a no brainer for me. I was ER+ and the ovaries produces a small amount of estrogen, so I wanted them gone. 

    The hotflashes were the only true problem for me. And, one year later they are much less. 

    I say do what you can. I was out of work for 3 days and I really dont regret it. 

  • dutchiris
    dutchiris Member Posts: 855
    edited July 2013

    My doctor recommends having my ovaries removed and switching to an AI. It makes sense to me. I plan to have them out. Until I can have the surgery, I get Zoladex and Tamoxifen.



    My path report said ER+ >75%. The surgeon said that is the highest range they report. Some here seem to have more precise numbers. Why is that?

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