Diagnosed with ALH and on Tamoxifen

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JaneyK12
JaneyK12 Member Posts: 23
edited May 2016 in High Risk for Breast Cancer

Hello All--I've been reading the encouraging, frank, and informative posts for three months now, ever since my excisional biopsy in one breast (after a cluster of calcifications finding) that resulted in the ALH diagnosis. I would love to hear from anyone else who has this same diagnosis, with no family history, and no other previous diagnoses. My high risk status means I will be monitored every 6 months. Has anyone had a good outcome after the 5 years? Please comment privately or on this forum. I have not had genetic testing and/or a prophylactic bilateral mastectomy because my surgeon told me I don't need to. I'm thinking he said that because the treatment would be the same (with no real family history). For those of you in this same category, how have you handled it? I realize everyone's situation is unique but I have no one else to talk to.

Thank you for any opinions or information.

JaneyK12

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2016

    JaneyK12, I have a friend who is going through this now. If you want to PM me your email I can see if she would like a buddy to talk to. (she has ADH though not ALH)

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  • JaneyK12
    JaneyK12 Member Posts: 23
    edited May 2016

    Thank you so much, cookiegal. I did hear from your friend. I am glad she is still OK after all these years. I am encouraged by getting these responses. I feel better that I haven't others to talk to about it.

    You deserve a BIG cookie for being so nice!! Many thanks again. Have a wonderful weekend.

    JaneyK12

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  • leaf
    leaf Member Posts: 8,188
    edited May 2016

    I do have ALH, but I also have classic LCIS. I underwent 5 years of tamoxifen. I had 2 biopsies about 6 months after I started tamoxifen, and have had no other breast problems after that. Its now been over 10 years since my ALH/LCIS diagnosis.

    Percentages are really hard to come by, but probably less than half (less than 50%) of women with LCIS will EVER go on to get an invasive breast cancer or DCIS. The usual risk for ALH women is much less than that (?maybe half of 50% or 25% lifetime risk?) These are very rough numbers, because breast cancer prediction is in its infancy.

    When I was diagnosed with LCIS, my surgeon said she refused to do any further surgery on me (besides the breast excision which was to try to detect if there was anything worse like DCIS or invasive breast cancer in the area.) At the time she was the only breast surgeon in my insurance network. So, since you aren't going to have surgery unless you have a surgeon who will do one, I didn't have BPMs. I wanted to do something, so I took tamoxifen.

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  • JaneyK12
    JaneyK12 Member Posts: 23
    edited May 2016

    Leaf,

    I am so glad you are doing well and I am encouraged by your post. You are lucky to have had such a good breast surgeon. I do feel proactive--that I am "doing something"--by taking the tamoxifen. I often wonder how I will know the drug is working. This question was answered when I recently needed blood work and discovered my HDL is very high (75), when it used to be around 62 (I haven't changed my diet or increased my exercise.). I know I will be monitored by MRIs and mammograms, but I see the new HDL as a positive sign that this drug is working for me.

    Thanks very much for sharing your story. It definitely gives me hope.

    JaneyK12

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