Atypical Hyperplasia

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

Diagnosed approx. 12-15 yrs ago after sterotactic biopsy with atypical hyperplasia. My Dr. followed me closely with yearly mammograms and yearly breast examines. Dr is retired now and new Dr. is pushing Tamoxifin or Evista on me for the ADH. Don't know if I should go on meds. afraid of side effects. (increase in uterine cancer, bld. clots., etc.). Question how many people are on meds and what side effects. How many people decide against meds., and just close follow-up. Please help. I'm driving myself crazy with trying to make a decision.

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  • momoschki
    momoschki Member Posts: 682
    edited April 2019

    Lulu, I have an ADH dx (8 years ago) and have chosen to take Evista- if you are post-menopausal, this may be an option for you. The only side effects I've had are insomnia and some hot flashes, but then, I had these before the Evista. Unlike tamoxifen, it does not carry an increased risk of uterine cancer. For me, the risk reduction is worth it. I am followed closely as well. If your side effects turn out to be intolerable, you can always stop. Have any if your doctors estimated what your personal risk is? Do you have a family history?

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  • lululinks
    lululinks Member Posts: 14
    edited April 2019

    Hi. Thank-you for your reply. No family history. Just don't understand after being diagnosed so long ago with ADH and ALH this new Dr. wants to put me on meds. The side affects really scare me. I guess I just don't have the trust in this new Dr. yet. Because if my first Dr. was still treating me I would have the trust and take his advice. This is why I'm reaching out to this forum for advise. Thanks again for your reply and best of luck to you.

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

    I had ALH ten years ago but besides an excisional biopsy, no treatment was recommended. I really haven't heard of an anti-hormonal being prescribed for ALH/ADH. There are potentially serious SEs from Tamoxifen/AI, although many women tolerate them well. I'm hoping other women will chime in.

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  • LynnVB
    LynnVB Member Posts: 24
    edited April 2019

    I was diagnosed with ALH 3 years ago. I had a lumpectomy and am on the 6 month mammo/mri rotation.

    I declined chemoprevention; so far so good. My BS really pushed tamoxifen but my onco supports my decision and is comfortable with it. I am a very low risk other than the ALH find, although it still comes out as 30% lifetime risk. With medication itcuts it in 1/2 but the absolute risk is only 4% or so higher than the normal risk of women my age.

    I do wrestle with the decision to not take medication, but for now that is what I’m doing.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2019

    Ten years ago chemoprevention wasn’t standard of care. It is now.


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  • lululinks
    lululinks Member Posts: 14
    edited April 2019

    Can I ask how you know this? Thanks

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  • lululinks
    lululinks Member Posts: 14
    edited April 2019

    Thanks for your reply. I think i'm going to stay away from the meds. With the meds there are too many side effects to worry about along with the fact that I worry about the increase in developing breast cancer. Can I ask what your Onc. input was. Thanks again.

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  • lululinks
    lululinks Member Posts: 14
    edited April 2019

    Thanks for your reply. I too wish others would chime in..Are the side effects worth it? And how many people just do mammos and no chemoprevention.

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  • momoschki
    momoschki Member Posts: 682
    edited April 2019

    I'll just say that for me, the (minimal) side effects are worth it. There is a lot I cannot do to change my risk: ADH dx, number of children I had, my family history, age at menarche/menopause, but the way I see it, this is one thing I CAN do to cut the risk- and sadly, as the years go by, risk goes up, not down.

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  • pegasus68
    pegasus68 Member Posts: 73
    edited April 2019

    I rejected tamoxifen for nearly 5 years after my LCIS diagnosis due to concerns about side effects. However, a recent study shows that a low dose of tamoxifen effectively reduces risk with fewer side effects than typically occur at the normal dose of tamoxifen. (See https://www.breastcancer.org/research-news/low-dose-tamoxifen-after-non-invasive-dx ) After seeing the results of that study, I agreed to try the low dose - after 3 months, so far, so good. You may want to ask your dr about the lower dose. (I do this in addition to high risk surveillance alternating mammo/MRI every 6 months)

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  • lululinks
    lululinks Member Posts: 14
    edited April 2019

    Hi,thank yoju for your reply. I will research the lower dose. At this point I just don't know what to do. This new Dr. I go to is very, very, pushy with medication. My former Dr. was great he explained things and I trusted him. He has since retired. Thank you.

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  • CasM
    CasM Member Posts: 110
    edited April 2019

    I was diagnosed with ALH 10/18. I had excision biopsy and decided against chemo prevention. Side effects were not worth it to me, plus I have history of blood clots as well. I will be on increased surveillance with every 6 months MRI/Mammo. I have my first MRI w/contrast April 11, and am not looking forward to it. I have researched how to prep for the contrast dye and have incorporated supplements to help with the removal of the gadolinium before/after. If you don't trust your Dr. can you go to another? Advocate for yourself and find someone that you can work with, you have a long surveillance period and IMHO you need to like your Dr.

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  • lululinks
    lululinks Member Posts: 14
    edited April 2019

    Hi, thank-you for your reply. I too feel the side effects aren't worth it. I have thought about another Dr., but at the current place, I get a 3D mammo, I get my results, and then the Dr. examines me all before I leave. Not to many practices offer that where I live. I really trusted my previous Dr. and he was very cautious and I feel he would have suggested chemoprevention if he felt it was a good idea for me. I wish you the best of luck on 4-11. Thank-you, and have a good day!

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  • Catlady85
    Catlady85 Member Posts: 1
    edited April 2019

    Hello everyone,

    Reading through all the comments has become a nice educational read. I was just dx with ADH with the radiologist recommedation of excisional surgery. I have an apt with a BS next week, as well as a second apt with my friend's BS who is a 7 year BC survivor. It never hurts to get a second opinion! I'm trying not to panic reading through the forums on ADH, since everyone's diagnosis and journey is different, but it's a relief feeling you're not alone in all this!

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2019

    Dear Catlady85,

    Welcome to the BCO community. We are so glad that you have found some benefit in reading through the posts on the boards. Good luck with your appointment next week. Keep us posted on how things go for you. Let us know if we can be of help.

    The Mods

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  • Cindym6519
    Cindym6519 Member Posts: 2
    edited September 2019

    My Dr prescribed the low dose tamoxifen for me after trying anastrozole, which had nasty side effects for me. I was going to opt for no treatment but then she showed me the study on the low dose tamoxifen. I've been on it for about 3 1/2 months now. Definitely fewer side effects, but still having hot flashes, hair thinning, indigestion, fatigue, more acne. Just glad I'm not taking a full dose!

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  • Utahmom
    Utahmom Member Posts: 63
    edited October 2019

    I am Atypical Ductal Hyperplasia Associated with Calcifications (2019) and Mild Ductal Hyperplasia (2014)

    I have lots of cancer in the family. Mom Stage IV Skin Cancer and Stage IV Colon Cancer. My aunt Colon and Breast Cancer. 2 uncles Colon Cancer. 1 uncle Kidney disease. Two 1st cousins had the exact same breast cancer according to pathology. one died and one is 10 year survivor. Their cancer was in same place as my atypia and the mild.

    Dad had prostrate cancer. 1 aunt - colon. 1 aunt - uterine. 1 aunt- breast. One 1st cousin had breast cancer.

    I just cannot do the medicines unless it is absolutely necessary. I hate taking tylenol and I refuse to do any screenings at the airport.

    With my ADH with association Calcifications it predicts that 30 % recurrence is excised adn 50-60 % chance of future breast cancer development. That is before my family history, dense breast, 1st child at 43, etc. I do not know what the genetic tests will add to the above or how they add in the additional information to get my number.

    Would anyone else consider a mastectomy if this was you?

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