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Kimf3's avatar
Kimf3
New member
18 hours ago

Ceasing hormone therapy

Hi Everyone. I am 43 and was diagnosed in October last year with Stage 1 ductal breast cancer in my left breast. I had a lumpectomy and sentinel node removal in November with clear margins and clear nodes. Completed a three week course  radiation  in January and started zoledex injections in December and exemestane tablets in January. Since late January I have had extreme pain in my right shoulder I’ve had an ultrasound, x-ray and a cortisone injection. My joint pain is quite significant and is really impacting on my lifestyle. I have pain in both shoulders, my hips and arms. I can’t get comfortable to sleep. I’ve been told that this all due to the hormone blocking therapy. I am seriously considering stopping therapy. I was pre-menopausal before commencing hormone blockers and feel that the impact of these side effects on my life outweighs  the potential of reducing the chance of the cancer returning. has anyone here experienced the same and stopped treatment? If so did your side effects subside? Any information would be gratefully appreciated. 

 

side effects

1 Reply

  • Katieh's avatar
    Katieh
    Member
    1 hour ago

    Hey there, slightly different situation as my drugs were tamoxifen that I tried and then stopped.

    My main issue was the flare up of old back issues which I decided (amongst the other side effects) was too much of an impact of my quality of life. My oncologist was supportive of stopping as risk of recurrence is already low so definitely worth having that conversation to factor in your decision. 

    But I’d say all symptoms (hot flushes, discharge, shoulder pain) all stopped almost immediately. My back took a little while to calm back down. I feel ‘lighter’ knowing I’m not on meds but do have the odd ‘what if’ moment. I balance that with the low risk, the fact that it could come back even on meds or it might never come back at all. It’s a tough decision, which I’m now at peace with, good luck making yours! 

    Ps below is the link to when I asked the similar question if you want to see other responses! 

    https://onlinenetwork.bcna.org.au/discussions/young-womenforum-board/to-tamoxifen-or-not-to-tamoxifen/266113