Ovaries, menopause, timing

Poke
Poke Member Posts: 225
edited June 2014 in Genetic Testing

Hello, 

I am BRCA2, post BMX with TE, currently undergoing chemo. I am already worried about when to get my ovaries out. I am 29. They say to go ahead and wait until I'm 35-39 but I am so fearful of waiting. What if I wait too long? Screening for ovarian cancer is poor. But I'm also scared of menopause. I could have them out after chemo or keep them potentially another nine years. Even with them, I'll still need tamoxifen. I hate to be cliche, but it's just not fair!

Anyone been through or going through this decision? I do not feel strongly about having my own children and chose not to preserve any eggs. Fifty percent chance I was passing this nonsense on anyways :(

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  • ab1234
    ab1234 Member Posts: 54
    edited November 2012

    Hello Poke!

    Wow, it sounds as though you've gone through a lot but it's great that you are arming yourself with all of this information to make good choices. I'm also BRCA2 with strong breast and ovarian cancer in my family, but did not have breast cancer. Below is a mesage that I sent to another woman with a question about the ooph...Hope it gives you one side of the story, and good luck with your decision and your treatment! 

    I had my prophylactic ooph on the same day as my pbmx w/ TEs, at age 37. (Three surgeons all in one surgery!). While the procedure itself and the recovery was quite easy (perhaps compared to the recovery going on in my chest, at least), this has been the source of my most challenging post-surgery issues.

    I also had this done lapriscopically and the incisions are already not even visible, 4 months later! That's a good thing...

    BUT, within weeks of the surgery I started having pretty intense hot flashes. Within a month I was having crying/screaming fits, aimed only at my husband, of course (NEVER had this before!). Because I'm 37 they wanted me on some estrogen, so I went back on my former birth control pill which immediately stopped the hot flashes, but the emotional side took a LOT longer to show improvement. I'm recently now continuing the pill but not even doing the placebo week (which is GREAT, since my uterus was still causing a period), so we're hoping that this will help the emotional side even more without that "dip" in hormones for that week. I've also started a low dose of Prozac which is definitely helping too, and things are getting MUCH better.

    I am still VERY glad that I had the surgery, as my Mom had her ooph preventitively and then pathology revealed that she had Stage 1C ovarian cancer on BOTH ovaries! I just wish that my docs would have somewhat better prepared me for this kind of reaction. Now that I'm experiencing it, they tell me that it's all very "normal" and are determined to help me get better, but I spent weeks thinking I was going crazy. A little heads-up would have been nice! So hope this does not scare you at all, just being "real." 

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited November 2012

    Poke, there are no good options! Please realize, though, that such an early menopause has its own set of problems. In addition to the ones ab1234 has told you, there are studies that suggest that women who have a surgical menopause at age 35 live, on average, 10 years less than women who don't. Estrogen has good functions like protecting the heart and bones. Since you were ER+, I don't think your docs would agree to HRT for you.

    I am so sorry you are facing this dilemma. It's like you're between a rock and a hard place.

    I wish I had words to make you feel better, but  I don't.

    Leah

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  • Poke
    Poke Member Posts: 225
    edited November 2012

    Thanks for all the info, both of you. Ughhh.

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  • SAMayoFL
    SAMayoFL Member Posts: 958
    edited November 2012

    Poke, I was 44 at age of diagnosis.  Chemo put me in instant menopause.  My onc. said I needed to have hysterectomy/ooph within the first three years of taking Femara.  About three months ago I thought I had a bladder infection.  To make a long story short, they decided I needed to go ahead with hysterectomy/ooph.  I have metastatic BC to both ovaries, tubes, uterus, cervice and peritoneum.  And, by the way, I was being monitored "closely".  I had the CA-125 done every three months and an ultrasound done once a year.  I wish I had done the hysterectomy/ooph before reconstruction or anything else.  I know our age difference makes a difference in how you proceed but BRCA2 is bad stuff.  Take care of yourself as best as you can!!  From now on, when I have a feeling something is wrong, I am going to pursue it until someone listens!


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  • Poke
    Poke Member Posts: 225
    edited November 2012

    It's funny that you chimed in. I was reading some of your posts last night and trying figure out what happened ... I am really hoping for the best for you. I had read people with surgical menopause before age 35 died on average 10 years early than those who didn't and had once again considered waiting until then... Who knows why or how they died - I hate info like that! And then I read stories like yours and it's just all baffling. Thank you for the message and the advice.

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  • Poke
    Poke Member Posts: 225
    edited November 2012

    (I read your posts before you messaged me, but I didn't want to seem like a stalker!)

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