rejecting hormone therapy

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lululinks
lululinks Member Posts: 14
edited August 2019 in Benign Breast Conditions

Wondering has anybody rejected hormonal therapy for ADH . or ALH?

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  • onceabird
    onceabird Member Posts: 23
    edited June 2019

    I meet with the oncologist at the end of the month after a Dx of ADH along with dense breast tissue. I am very concerned about the side effects of hormonal therapy, and also I am only 34. Reading what I have read about the incidences of side effects, particularly blood clots and endometrial cancer (which my Maternal Grandmother had and needed a TAH-BSO at 54), I am not on team hormonal meds. I will obviously discuss this carefully with my oncologist first, but I can see why people hesitate, especially when they have limited risk factors.

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  • Muffkin78
    Muffkin78 Member Posts: 60
    edited June 2019

    I decided no for now, based on my personal calculated risk and what the risk would be on tamoxifen - it didn't seem that dramatic a risk change at this point. However, I want to revisit with the oncologist as my risk goes up with age - I think in 5 years or so, it will be worth it based on risk change. I am doing the 6-month monitoring - just got a clear MRI last week.

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  • Sherri000
    Sherri000 Member Posts: 47
    edited June 2019

    I am disabled with multiple chronic health issues. In October last year I had an excisional biopsy for grouped amorphous micro-calcifications and was diagnosed with ADH. Due to my other health issues and my low tolerance for most medications and zero tolerance for any hormonal treatments, I declined any hormone therapy.

    I insisted on a breast MRI at my 6 month followup. A mass was found with both smooth and spiculated margins. I was sent for a second look mammogram and ultrasound. After those I spoke with the radiologist and he told me it was very smart of me to have asked for the MRI as the mass was hidden in dense tissue. He said it was not easily seen on mammogram and while he saw it on ultrasound it was possible that it was missed last October given the dense tissue. He rated the mass birads 4 and recommends biopsy.

    I have an appointment with my BS this coming Wednesday (12th) to discuss the next step

    So, long story short, I would say if you have ADH and dense breasts be sure to get an MRI. As far as hormone therapy, I think it's a personal choice. If you don't do it be sure to get your regular monitoring. Odds are they will catch anything right away. Good luck. :)

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  • CasM
    CasM Member Posts: 110
    edited August 2019

    I was diagnosed with ALH - Oct 2018. Removed with excisional biopsy, I denied hormonal therapy, I am 53. I did not want the side effects of aromatase inhibitors. I made ALOT of changes in my lifestyle (SO SO MANY), nutrition, movement, and added supplements. I have done ALOT of research and my changes are the best for me. I am on 6 month monitoring with MRI/3D mammos. I had a clear MRI in April. October will be the mammogram.

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  • cassiecanada
    cassiecanada Member Posts: 166
    edited August 2019

    What is ALH ?

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2019

    Atypical lobular hyperplasia. I had it about ten years ago. Quick excisional biopsy and that was the end of it.

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