Getting overies out??

Bon BonBon Bon Sunshine Coast Member Posts: 28
I am thinking to lessen the risk of overian cancer, to get them out, I have both breasts off and nose clearence, on the dreaded Tamoxifen 

Comments

  • primekprimek Broken HillMember Posts: 4,293
    If you carry a BRAC 1 or 2  faulty gene then yes it would most definitely assist but not elimate the risk of ovarian cancer. 

    If you are pre menopause and would like to change to an aramatose inhibitor then that can be an option or have ovaries knocked out with drugs or radiotherapy is another.   This needs to be discussed with your oncologist or breast surgeon. 

    You would need a referral to an onco-gynacologist to discuss all risks and appropriate surgery. We can be quick to say ...take it all...but knowing real risks and risk reduction surgery  that is really necessary is best to discuss with appropriate specialists. A genetic referral to discuss risk factors is enlightening and certainly reduced my anxiety after testing gene negative.
    Kath x
  • ZoffielZoffiel Regional VictoriaMember Posts: 1,935
    I got rid of mine. Though I was perimenopausal before hand the last step was a doozy.
    I don't know if I have the gene, but my cancer did return after 10 years. I'd already had 2mx, chemo and Tamoxifen. This time more surgery, chemo rads and Femara. The last straw for me as the talk of having Zolodex for three years. Thanks, but I'd rather they come out.
    No surgery is without risk and being crashed into full oldladydom has not been comfortable. Marg
  • Tilly45Tilly45 Port MacquarieMember Posts: 66
    I decided to have mine out just before Christmas. I haven’t skipped a beat, everything went well and quick recovery. I was not interested in having those awful Zolodex injections any longer. I too was pre menopausal so just Femara and oral chemo meds now. No reduction in hot flushes unfortunately.
  • JoJoCamJoJoCam Member Posts: 3
    I had my ovaries out on December 20 (actually ovaries, tubes, uterus and cervix) - procedure went well and recovery so far is good.  I am BRCA1 positive and removed my ovaries and tubes as risk reduction (my breast surgeon and I chatted about removing the uterus and my decision was made from our discussions).  Op was done through the public system by a specialist onco-gynacologist with minimal wait time due to the gene mutation.  My cancer was a grade 3 triple negative, I had a lumpectomy in October 2016, did 4 of 6 chemo cycles and radiotherapy x 20.  Chemo had kicked me into menopause so I have been struggling with that over the last 8 months or so anyway and nothing really has changed other than I am extremely emotional - however this could be because I've been off work and finally processing everything that has happened over the last year.  My sister is also BRCA1 positive, has not had breast cancer and had the same procedure in November.

    I am at peace with my decision as the worry about ovarian cancer (which a paternal aunt had) and the inability to screen for it well enough, was not something I wanted to have in the back of my mind....
  • Rose58Rose58 Member Posts: 1
    I had a mastectomy for E+ BC in 2004 and because of a positive CRA blood test later in that same year had a total oopherectomy - everything but the cervix!! So at 45 - in a super emotional year, I lose ALL my hormones. Ladies, please spend a moment to consider that yes, your ovaries can cause cancer; but they also help make us who we are, soft, caring, warm beings. Since losing my ovaries I could care less about the opposite sex, and menopause 13 years later is still driving me nuts (because of BC no help to be had). I can still cry at the drop of a stupid glass, yell at the most innocent comment and have hazy brain to this day!!
    I have other things going on in my life now of course, but am sure that the decision about the ovaries removal was made in far too much haste, they have so much more to do with how we function than we give thought to - until they are gone :(
  • ZoffielZoffiel Regional VictoriaMember Posts: 1,935
    Good point @Rose58 ; . My decision to get rid of mine at 54 was easy as I already had one foot in the menopause cauldron so all I was doing was accelerating the process. I'd had a recurrence and, after my second surgery/chemo/rads experience I was soooo over being poked prodded and injected that the idea of Zolodex to facilitate Femara was one idea too many.

    When I was first diagnosed at 43, the Muppet who was my oncologist never suggested an oophorectomy, I just went straight onto Tamoxifen at the end of acute treatment. I don't know how I would have made that choice if it had been offered, but, being an all or nothing person I would probably have done it. Then regretted it. But it's possible I wouldn't be in the predicament I'm in now if I hadn't been merrily producing a shit load of oestrogen for the last ten years. Who knows.

    It's all such a minefield; you try to reduce risk A which puts you square in the crosshairs of risk B. It only takes (for me) one incidence of poor communication or misinformation and I lose confidence in the people I am relying on to advise me. So then it becomes a situation where I get as much information as I can then run with my gut feeling. Which is all I know how to do but I'm finding there is so much we are not told about side effects. Information that would be very useful when you are making a life changing decision.

    Marg xxx
  • Bon BonBon Bon Sunshine Coast Member Posts: 28
    Oh wow, a lot to think about and talk to my gynaecologist about, id so rather not worry about ovarian cancer but I miss my attraction to men and sex, which is non existent, I’m so emotional I cry at the drop of a hat. 
  • AineGAineG Member Posts: 53
    Hi Bon Bon,  I also had the ovaries out (kept uterus and cervix)  late last year after twelve months on zolodex.  I decided on this treatment not because of any fears for Ovarian Cancer (I'm not BRAC1 or 2) but after finding out that my particular hormone +ive cancer is more likely to recur after many years  ie 15-25 years, than the more aggressive cancers which have a greater likelihood of recurrence in 2 - 5 years.  Being given a five year treatment (zolodex) for a longer term issue didn't seem to make sense.  NOTE: it's not that the risk of recurrence is any greater or lesser, just that the timing of expected recurrences is different.  It seems I have more in common with Jane Fonda that I thought!! :)
    best to speak to your oncologist who can discuss your profile and whether or not ovarian cancer is a risk for you or not.
    Good Luck Aine
  • Anne65Anne65 Member Posts: 119
    Hi I am waiting for my gene test results to find out if I carry the BRCA genes. I had the test 30th Jan & they are going to rush it through in around 3 weeks so i am half way there. Stressing about the results as I am waiting to go through rad treatment but they don't want to do that in case I am positive & then have to make a decision whether to have a mastectomy in which case, reconstruction is much harder after rad treatment. The gene counselor said I should consider having my ovaries out even if I am negative as my mum died at 46 y.o. of ovarian cancer & now with my breast cancer, she said I should consider it. I have always been paranoid about getting it & have had a few ultrasounds to check but it really is a silent killer that can't be screened. I don't have a problem about getting them out but will certainly be guided by the med team. I am already menopausal so hopefully it won't be as bad as if i were 5 years younger.
  • Bon BonBon Bon Sunshine Coast Member Posts: 28
    Anne65 that’s what I thought, it’s a silent killer that one, and I don’t need them. I caught up with a old friend at Christmas she had breast cancer, now ovarian but terminal. 
  • Anne65Anne65 Member Posts: 119
    @Bon Bon How horrible. What a sad story & I'm sure that has impacted you & your decision. I am struggling with my decision on what comes next in regard to a mastectomy or not, if my result is positive but I do not want to go through what my mum did as she suffered for 6 1/2 yrs before passing away at 46 y.o.. I was only 4 y.o. so I don't even remember her but can only imagine the trauma it had on my dad having to then raise 2 girls aged 4 & 7 when she passed away. I would get them out in a heart beat to save my family going through what my Dad went through. Good Luck with your decision & let us know what you decide. hugs xx
  • Bon BonBon Bon Sunshine Coast Member Posts: 28
    Omg you poor thing, my braca gene came back negative so for me if there is too much on the negatives for getting as much out as I can, down there I will!! Ps I’m what you mean by the rad treatment?
  • Anne65Anne65 Member Posts: 119
    @Bon Bon Sorry, the rad treatment is the radiation treatment. Following my lumpectomy, my medical team decided that radiation treatment would be my next step BUT if you have radiation treatment & then in the future decide to have a mastectomy & reconstructive surgery(which they may suggest if my test comes back positive), then the surgeons find it very difficult to do reconstruction surgery as the skin is hard to "reconstruct" if you have had radiation. So, that's why everything is on hold until my gene test comes back. I am ready to begin radiation treatment ASAP if the test is negative & I have already done the setup & planning for the radiation so I just have to wait it out for another couple of weeks yet! Fingers crossed!!
  • Anne65Anne65 Member Posts: 119
    @Bon Bon My gene test result has come back negative....yah, so I am off to start my radiation treatment next Wednesday. I have decided to see my surgeon after the radio treatment to discuss my ovary removal & my sister is keen to have the surgery also. I would hate to have a secondary cancer return in my ovaries & with my mum passing away, i probably have a greater risk of getting it there. I am looking forward to discussing this surgery & finally putting an end to something I have been worried about for years. Good luck with your decision.
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