BRCA1+, Survivor, Considering hormone replacement

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shiver
shiver Member Posts: 5
edited June 2014 in Genetic Testing

I'm currently 38 yrs old. (The age my mother was when she died of a mets of BC) I was diagnoses with BC at age 25. The only person to live past 40 has been my grandmother. I had a double mastectomy and opp after I found out I had cancer and then was tested for the gene. I am triple negative. 

Being without estrogen the last 12 years has been horrible. Sex is a problem, memory problems, severe joint/bone pain, depression, daily headaches, feeling tired. Sometimes I can't believe I have done this to myself. I often think that quality of life is just as important as quantity of life.

Anyone know anyone who took hormone replacement after surgery? Did they ever have mets? I know I am extremely lucky I have not had a recurrence with my family history and my personal history. I go to the doctor again on Friday. And again am begging for help. They always tell me no.... I always wonder if they like being intimate with their spouses when they tell me no.... I know I am being dramatic here. I'm just frustrated! Don't get me wrong, I AM HAPPY TO BE ALIVE! I am. I just wish I could have my cake and eat it to. 

Any real suggestions? 

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  • cp418
    cp418 Member Posts: 7,079
    edited September 2013

    I hear you and have the same problems after ooph procedure - but tested BRCA neg.  Maybe these links will help your dicussions with your docs.  Some days I can barely stand up straight and the other parts are miserable too.

    http://www.cancer.net/cancer-advances-new-information-women-brca1-and-brca2-mutations

    http://www.onclive.com/conference-coverage/asco-2011/Post-Oophorectomy-Hormone-Replacement-Therapy-Safe-for-BRCA12-Mutation-Carriers

    http://news.cancerconnect.com/hormone-replacement-therapy-after-ovary-removal-may-be-safe-for-brca1brca2-carriers/

    http://www.uphs.upenn.edu/news/News_Releases/2011/06/hormone-replacement-therapy/

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  • shiver
    shiver Member Posts: 5
    edited September 2013

    cp418

    I can't thank you enough for all this research. It is extremly helpful and exactly what I needed. 

    I did have my appointment with my PCP. It did not go well at all. It was my first appointment with her at this base. She tried to say that all my symptoms were in my head and that what I really needed was to see a counselor. That I don't have any menopause issues. Needless to say I will be requesting a new provider. Some of the things she argued with me about is the simple need to get labs done. She said I didn't need to have any done. ARG

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  • apandy
    apandy Member Posts: 62
    edited September 2013

    Your doctors sound like they are being very insensitive.  If your cancer is triple negative then it is not hormone receptive.  I have read here, and on other forums, of triple negative patients whose oncologists and GPs have been fine with them taking HRT.  I agree that quality of life must be considered too.  Personally I feel that if your menopause symptoms are making you so miserable then you should consider going back on HRT.  Of course there are risks, but there are risks with everything and for me, the risks from HRT pale into insignificance besides the misery of night sweats, low libido, sleepless nights etc that menopause symptoms bring. 

    I came off HRT 2.5 months ago when I was diagnosed, but am considering going back on if things don't improve.    My hot flushes are driving me crazy and I really don't know how long I can keep going without the HRT.  I am determined to try staying off HRT for 6 months to see if things settle down, but, if they don't, I will probably go back on. 

    I think this is a persoanl choice.  Some people will try to discourage you from taking it, perhaps because they have hormone related cancer or because they have not experienced very severe menopause symptoms.  But no-one can know how it actually affects your quality of life.  If your GP won't prescribe HRT perhaps they don't understand that triple negative is not a hormone related cancer.  Have you explained this to them?  If they still won't prescribe it perhaps you should consider changing your GP  i am sure plenty will prescribe HRT if you ask.

    Good luck

    Anne

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