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Breast pain on Oestrogen only HRT?

HelloCarolineHelloCaroline Member Posts: 52

Hi, 
I have BRCA2, I had bilateral preventative mastectomy 11 years ago, and I had preventative oavriohysterectomy 3 months ago. I have been on oestrogen only patches since the gynaecological surgery. I have had quite severe pain in my remnant breast tissue. My gynaecologist seemed unconcerned with this, but I have been anxious for 2 reasons : 1. The pain is hard to bear 2. I'm worried about triggering breast cancer. I have taken things into my own hands and lowered my dose of estrogen by chopping up the patches, and this has helped greatly reduce the pain, but I'm still experiencing some discomfort approximately 12 hours after the application of a fresh patch material. I'm not experiencing hot flashes, so I'm using that as a guide that I'm getting moderately sufficient oestrogen, but I'm unsure if it's enough for brain and heart health.  I have an upcoming appointment at the Womens menopause clinic in October... but am slightly feeling in a "medical wilderness". If anyone else has managed to find a medical specialist who takes a holistic view of BRCA gene defects, breast, ovarian and HRT issues, I would love to hear about them. I'd also love to hear of anyone who has navigated similar challenges.

Thank you very much 🙂

Comments

  • arpiearpie Mid North Coast, NSWMember Posts: 6,122
    Sorry I can’t help you re suggestions, but sounds like chopping the patch was a good idea.

     Your gynae should have addressed your pain issues ... sounds  like they’ve ignored you.  :(

    Can you speak to a breast care nurse ... don’t wait til Oct! (Or see if you can get in way earlier xx)

    take care xx all the best xx
  • HelloCarolineHelloCaroline Member Posts: 52
    Thankyou arpie. Your reminder to keep seeking an answer on this is helpful - I'm feeling a bit worn down by it all... but need to keep going 🙂 Unfortunately because I haven't had cancer (just BRCA2, bilateral mastectomy, and ovariohysterectomy plus a familial cancer history)... I don't have access to a breast care nurse. If anyone can suggest one that I can access (I am in Melbourne), that would be great. Thanks so much.
  • arpiearpie Mid North Coast, NSWMember Posts: 6,122
    Sending Message 
  • LocksleyLocksley Macedon Ranges, VictoriaMember Posts: 796
    I've sent message too.
  • HelloCarolineHelloCaroline Member Posts: 52
    Thankyou very much arpie and Locksley. It's been really wonderful having some support.
  • HelloCarolineHelloCaroline Member Posts: 52
    A quick update for arpie and Locksley:  I managed to get in touch with a doctor from the familial cancer unit where my BRCA2 was originally diagnosed. They advised that the breast pain was a side effect of the oestrogen HRT, but did seem unusually severe. They advised that I have a few days off and then start on a lower dose. They did not seem concerned about triggering cancer with the oestrogen HRT.

    The few days off are heavenly : breast, arm and back pains have stopped and I feel clear headed for the first time in 3 months. (I'm aware that I may be in a blissful window before hot flushes set in🙂). I'll see how I go.

    Many thanks again to you both for the support. 
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