oophorectomy and HRT

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venus514
venus514 Member Posts: 2
edited January 2018 in Genetic Testing

Hello! I'm 35 years old, BRCA1 positive and was diagnosed with stage one triple negative breast cancer when I was 32. got both breasts removed and did chemo. I'm feeling great now. I'm getting an ultrasound done every few months for my ovaries. my last ultrasound shows a complex cyst on my left ovary so my doctor suggest that I do a oophorectomy to reduce the risk for ovarian cancer. I'm going into surgery Jan 21st. my doctor said that because my breast cancer was triple negative I can be on HRT to reduce the menopause symptoms. but I'm still worrying about these symptoms…. I mostly worried about the sexual disfunction, low libido… and gaining weight, having hot flashes, looking old…. I know it sounds stupid but I'm really freaking out about being like a 60 years old at 35…. I'm newly divorced, no kids, and just starting to live again and feeling at my peak (sexually)… is there any one out there at around the ages of 30-45 who can please share your experience of being on HRT after oophorectomy? does HRT helps any? or do you still get hot flashes, low libido, vaginal dryness, dry skin etc… I know every one is different, but I still would like to hear your experience… Thank you ^.^

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  • Holly618
    Holly618 Member Posts: 6
    edited January 2014

    venus514...This post hits really close to home.  I am 34. Diagnosed with triple neg breast cancer.  I am also BRCA 1 positive.  I am married but do not have kids. I was trying for a few years before diagnosis. Now I'm facing a tough decision about oopherectomy and total hysterectomy right away or waiting to see if I can try for a baby.  I have the exact same questions you do so I am so glad I found your post.   My ob/gyn said that they often use Effexor to help with the hot flashes instead of HRT.  The double bonus of helping with depression that inherently comes with this horrible experience.  

    You are not alone and I am grateful to find others that help ease the burden. Stay strong!

  • venus514
    venus514 Member Posts: 2
    edited January 2014

    Hi Holly618, Thank you so much for responding to my post, Its good to know I'm not alone… but I wish none of us had to deal with this thing. update - I had my surgery yesterday and thank god the ovarian cyst was not cancer. so my doctor took out only the left ovary which had the cyst in it and the two fallopian tubes, which leaves me with only the right ovary, to produce the hormones that my body needs so I don't go into menopause. she said it will reduce my chances for cancer a bit but I still have to do the ultrasound every month or so to make sure the remaining ovary is healthy. and if it shows any sign of abnormality it must be taken out as well… so I still wish someone who's at around our age would come forward to let us know their experience with being on HRT after oophorectomy. so we know what to expect when and if we do have to go through full oophorectomy… doctors don't give much info and its always better to hear from real people who are going through this too.

    and p.s. question - why are you thinking of doing total hysterectomy? as I know, if you don't have cancer yet in your ovaries then its ok to leave the uterus in and just remove the ovaries and tubes… this is what my cosine did who is BRCA1 also, after she was done having kids, at 39, she didn't want to keep worrying about ovarian cancer so she removed her ovaries and tubes only, but not the uterus. this way you still maybe have a chance to get pregnant if you freeze your eggs... I think thats what my doctor said…. I wish you all the best 

  • mazras
    mazras Member Posts: 1
    edited January 2014

    I had a preventative opherectomy (my mom and aunt died of ovca) when I was 39.  I had no menopausal symptoms because I want on a HRT patch.  I always knew there was a risk of breast cancer from staying on the patch but I also did not want to go into early menopause.  Thus, I monitored myself through mammos and breast mris every 6 months.  This past October, I was diagnosed with DCIS in one breast.  Because of family history, I did a bilateral mastectomy.  Rather than go cold turkey, I have been weaning myself off the HRT.  So far, the hot flashes and night sweats are dealable.  I am not thrilled to wake up in the middle of the night several times or gain some weight.  On the other hand, I want to avoid getting cancer as much as possible.  Hope this helps.

  • Holly618
    Holly618 Member Posts: 6
    edited February 2014

    Venus 514- When I first met with my OB after diagnosis I was gung ho about just getting anything out that may increase risk of cancer so I wasn't even thinking that pregnancy was even an option.  The more I thought about it and talked it over with my hubbie... I want to investigate the risk to trying to get pregnant after treatment ends and explore my options further.  Not sure I could ever afford In vitro but there are a lot of things in between that may work. 

    She recommended total hyst. if she was going to be in there getting the ovaries anyways and I wasn't wanting to have children.  That would significantly drop the risk of cancer.  I mean if the uterus isn't there... can't devolop cancer later or METS crop up unexpectedly after treatment.

    Since that appt my attitude has somewhat changed. So I just need to discuss the risks and see what they recommend.

    I do have a some uterin cancer history in my family but they are distant relatives. 

  • Dabbycosh
    Dabbycosh Member Posts: 1
    edited February 2017

    hi, I stumbled across your site. I know it's been a few years since your post. I had bc at 36, brca 1, chemo, bilateral mastectomy and reconstruction. Then in 2011 sub- oophorectomy. Removing ovaries, tubes and uterus ( because they can contain a bit of f- tube tissue). Started ERT a few months later, have been on it now 7 years. If you are triple negative and had Breast and ooh done, it is fine.And I would definitely say it has helped so much with surgical menopause and side effects. Skin, mood, bones etc... And peace of mind.


  • Joobs
    Joobs Member Posts: 3
    edited November 2017

    My mum and her grandmother had breast cancer. My sister. Lou was diagnosed with breast cancer in April this year. I had a mammogram in July and they found DCIS in my right breast. My sister's genetics came back as negative for Brca 1 and 2. Mine came back as positive for Brca1. I have since had a double mastectomy and immediate reconstruction and am healing well. I have a planned Salpingo-oopherectomy in January but was told by a Consultant that I should expect a Tsunami following it. Thanks. Having gone through everything that we have I would appreciate some advice particularly if you have a brca1 defect, had breast cancer and are having or have had this surgery in terms of how you felt after surgery.

  • Lula73
    Lula73 Member Posts: 1,824
    edited November 2017

    don’t have brca1 but do have brip1 mutation (may be involved with increased BC risk, definitely high risk for ovarian cancer). Had BMX with immediate DIEP flap recon in feb. had stage 2 recon along with hysterectomy, oophorectomy and salpingectomy 11/2. So far so good. And I haven’t been taking my anti-depressant I’ve been on for years either. Had 2 days where husband said I was grumpy (at least 1 of those days he came home from work grumpy and complained about a bunch of stuff I had no control over right when I was in the middle of something. So I’m calling that grumpy day justified.) Dealing with some acne issues on face, neck, upper chest & now upper arms. Temperature regulation (usually cold) also an issue but could be from my low red blood cell count I’m dealing with. HRT is not an option but dr may be ok with localized estrogen creams in the vagina to prevent atrophy. My hysterectomy was done laparoscopic assisted vaginal. Very little outright pain, some soreness. It’s hard to not overdo because I dont really feel like I had anything done-hope that makes sense. No big incision, no muscles cut, no problem standing/walking/etc. not at all like most surgeries I’ve had had.

    Hope this helps! Feel free to ask any questions..

  • Mimi68
    Mimi68 Member Posts: 112
    edited January 2018

    Hi there,

    I am so confused. I had DCIS Triple negative, can’t take Tamoxifen since no ER receptors. Am I to be looking into having oophetectomy? I’m 49 and likely peri-menopausal. Mine was Grade 3 and fast growing. I want to minimize my risk. Thanks!

    Mimi

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