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oophorectomy or ovarian suppression after treatment

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Hi all,
I'm back here after quite a while, with a question. I was diagnosed at 42 so premenopausal and along with all the other fun got put on lupron/letrozole. I had a bad time, major depression, all the hot flashes, etc. Got switched to tamoxifen after a few months and eventually things got better. 3.5 years out I am doing ok but my doctor wants to put me back on ovarian suppression.

Although the menopause symptoms stopped (possibly due to antidepressants?), my period never came back after chemo, again, 3+ years. My doctor wants to check my estrogen levels for a few months to see if I can do just the aromatase inhibitor, and maybe even lupron again.

I would like to not go insane again, but if I'm in "real" menopause anyway, should I just ask to have my ovaries taken out? My thought is, if it's the same effect anyway, why not give ovarian cancer a miss also? (I'm BRCA negative but it still happens)

My primary goal is like everyone to avoid recurrence to the best degree possible, but I can't have that bad time again. It was a very bad time.

Everything I read about this has advice for premenopausal women who I guess expected to get their periods again, and they say oopherectomy is bad because you're young and you'll be going a long time with possible bone loss etc. But it looks like I'm all done anyway?

Is there any qualitative difference between the OS/AI experience and oopherectomy exeperience? Is there something I'm missing? I will discuss with the doctor but next appointment isn't until January. Thank you for any thoughts.

Comments

  • laughinggull
    laughinggull Member Posts: 512
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    Hi erin_t,

    Oophorectomy would not replace the AI. Estrogen is not only produced in the ovaries, but also in other tissues. Even with an oophorectomy you would still need the AI, to block estrogen, if your canger was ER+. So I think the options that compares to OS+AI would be oophorectomy+AI, not just oophorectomy.

    I have no experience with OS+AI but my guess is that lack of estrogen is lack of estrogen, whatever the means to attain it, and it sucks. Sorry you got breast cancer at such a young age.

    LaughingGull

  • lillyishere
    lillyishere Member Posts: 773
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    I removed the ovaries to avoid getting Lupron shots. I was lucky in a way since 2 weeks after my surgery, hospitals stopped giving Lupron because of covid. I am glad that I removed the ovaries and I don't regret doing so considering that I would be few years on Lupron. I do take Exemestane daily.

    Are you thinking to remove ovaries to avoid going back to lupron?

  • kaynotrealname
    kaynotrealname Member Posts: 407
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    Taking out the ovaries are a big decision since they do seem to have some sort of function throughout a women's life. Statistically speaking, people who have their ovaries removed have a reduced life span. I have ovarian cancer in my family and suggested it to my oncologist but even with that she's not keen on it yet. So I'm on an ovarian suppressor and an AI. I'll revisit the issue in five years. Luckily the ovarian cancer doesn't seem to exert itself in my family until later in life and I don't have the gene that was found in my family so my oncologist does feel we have some time. But at any rate it's a risk versus reward kind of thing so it should be discussed with many specialists. For me I've discussed it with three doctors thus far. Two, both women and an oncologist and gynecologist, are iffy. The one who was a man, an endocrinologist, said take them out.

  • lillyishere
    lillyishere Member Posts: 773
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    kaynotrealname, you are right, it is a big decision. Cancer and 84 genes I got tested for don't run in my family but here I am with breast cancer. The first one and hopefully the last in my extended family. I was recommended to remove ovaries from a well-known MO (female, even though gender is not important to me) and also the female oncologist who does the ovary removal procedure. She told me that she would have done the same if she was me since ILC tend to spread to ovaries. I would prefer to have all my organs in my body as Mother Nature intended but once we have cancer, we get into the instinct of fighting for life and making decision that Mother Nature did not intend. Sigh!

    I also checked with PCP at that time and she said that the role of ovaries after menopause is not known. They do shrink significantly however, what role they play is still a mystery. Considering that I had 2 nodes positive, I imagine I always need to be careful to keep the estrogen to a minimum for the rest of my life.

    I would like to know what other women have done and why. Also, what is a good profit for Pharma, selling expensive lupron or not if women select surgery?

  • erin_t
    erin_t Member Posts: 31
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    It was indeed my plan to remove ovaries to avoid lupron. My only real justification for this is fear of ovarian cancer (though i have no more than baseline risk) and while we're at it it's a hassle to go to the city for a lupron shot. I don't mind taking the AI if i still have to.What do you think?

  • laughinggull
    laughinggull Member Posts: 512
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    In your case I would talk to an oncologyc gynechologist to get the story straight.

    I was recommended the oopho by two female onchologists, who also said they would do it if they were in my feet. I was in perimenopause with a bit of endometriosis and very painful ovulations -it felt as if my left ovary was exploding each time, and cysts were visible in US. So that was another reason, but even without that, the female MOs recommended it just based on my cancer features.

  • kaynotrealname
    kaynotrealname Member Posts: 407
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    Yeah I've read ILC can go to organs more easily than IDC so I could easily see taking them out there. And personally I'm still leaning that way for myself. Not now I don't think since I just don't feel like another surgery yet. But probably before I'm 55. My mother and her sister both had ovarian cancer. My aunt discovered a BARD1 gene and a BRCA1 gene of unknown variant but neither is associated with ovarian cancer at this time. My mother never got tested since she was the first to go and we just didn't know enough at the time to force the issue. Anyway, I don't have either but considering the two close relatives not sure I want to risk it especially since we can't pinpoint for certain a gene at this time. Anyway it's certainly a big decision.

  • kaynotrealname
    kaynotrealname Member Posts: 407
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    Oooh! I will add this if anyone is considering taking out the ovaries for ovarian cancer. Most specialists now are thinking that ovarian cancer is not actually originating in the ovaries most of the time but is actually seeded by the fallopean tubes and that's where it begins. My aunt was definitely determined to have her's originating in her fallopean tubes. My mother passed away before surgery so we don't know for sure with her's. But an option to lower the risks of ovarian cancer without touching the ovaries is to get the fallopean tubes removed. I did that about five years ago and boy am I glad considering how cancer has wreaked havoc on my family since then.

  • castigame
    castigame Member Posts: 336
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    At the time of diagnosis, all docs mentioned total hystrectomy. Cried my eyes out when all were taken out because it was symbol of being female to me.

    Looking back considering my BC was 98% hormone postive and medical history(mom had stage 3 ovarian camcer), total hystectomy was the right choice for me.

    Been on Arimidex for almost 6 yrs straight no issue at all.

    Yes, dryness is a negative but Aloe based lubricant minimize the concern.

  • lillyishere
    lillyishere Member Posts: 773
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    castigame, I agree with you. It is not an easy decision to remove the female organs but necessary to reduce the recurrence rates. I have removed breasts and ovaries and I regret not asking to have my uterus removed and not deal with exams. I still feel like a woman though.

  • nicolinabella
    nicolinabella Member Posts: 5
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    Castigame. I feel you so much. I just had my ovaries removed 10 days ago. I chose this instead of Tamoxifen which basically made me lose my mind. I’ve been crying my eyes out non-stop. I needed to do this because my breast cancer was ER/PR+ (diagnosed at 42) but I’m 44 and I’m second guessing myself. Did I do the right thing? Ugh. I just feel lost. :(

  • cp418
    cp418 Member Posts: 359
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    I was dx in 2006 age 49, ER+ 100%, PR+ 100%, Her2 neg, Stage 2 IDC 1 node positive. I was SWIMMING in hormones and had 2 periods during chemo until it shut down. After chemo and radiation treatments, I was briefly placed on Tamoxifen and I was a MESS. I kept feeling like my periods were trying to turn on - as if I was in constant PMS. I was unable to sleep, mental and emotional wreck - crying at the slightest thing for no reason. I requested a salpingo oophorectomy (tubes and ovaries removed) and I never regretted my decision. I used AI treatment Letrozole for 9 years. Yes, I later developed osteopenia and was treated for that condition but I followed my gut without regret.

  • creativezoo
    creativezoo Member Posts: 31
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    @nicolinabella OMG the tamoxifen has been hell for me as well. I already had a history of major depression and generalized anxiety before starting it and boy it’s done a number. I was taken off for surgery and I have awhile before they start it again but the thought of being on it makes me want to quit treating all together. I told MO that I can’t go back on it so they’re going to look into other options for me. Will go over those in March when I see them next.