Does everyone with ADH take Tamoxifen?

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ElsaJ
ElsaJ Member Posts: 16

I am wondering if everyone who has been diagnosed with ADH is taking Tamoxifen for prevention. Are there anyone out there who skip the drug route and just monitor every 6 month? My oncologist ordered the CYP2D6 gene test on me and found that i am a "poor to intermediate" metabolizer (meaning: I am lacking the gene/enzyme to metabolize Tamoxifen and it will not be as effective for me). With the side effects, and if Tamoxifen is not going to be as effective on me, I wonder if it is worth it for me to take it. Any thoughts would be greatly appreciated.

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  • Lea7777
    Lea7777 Member Posts: 274
    edited August 2018

    Monitoring is also an acceptable approach. You can try Tamoxifen and see how you react. Some don't take the drugs because of side effects. After menopause there are other drug options you can try as well. Does your oncologist recommend giving Tamoxifen a try despite your metabolism issue?

    I recall reading reading that the rate is about 1 in 7 women taking chemoprevention drugs for high risk breast conditions. That was seen as low and that more women should be encouraged to try the drugs.

    Here are some stats from 2012.

    ARTICLE CITATION

    DOI: 10.1200/jco.2012.30.27_suppl.46 Journal of Clinical Oncology 30, no. 27_suppl (September 20 2012) 46-46.

    Since January 2001, 487 women with a diagnosis of ADH, ALH or LCIS, or severe ADH have been evaluated and counseled in the Breast and Ovarian Cancer Risk and Prevention Clinic. 132/487 (27%) were advised against taking chemoprevention and 355/487 (73%) were appropriate for chemoprevention. Of those for whom chemoprevention was clinically appropriate, 188/355 (53%) took one of the medications, or participated in a chemoprevention trial. 53/188 (28%) did not complete therapy (discontinued at 2 weeks to 54 months) due to preference or side effects. 75 women have completed five years of therapy and 60 are currently on therapy.

    Good luck to you.
  • Ingerp
    Ingerp Member Posts: 2,624
    edited August 2018

    I had ALH nine years ago and there was no mention of Tamoxifen for prevention, although maybe that's a newer thing? And two years ago when I had DCIS, it was ER and PR negative, so, again, no Tamoxifen or AI. I feel like I'd be tempted to hold off and just closely monitor.

  • LynnVB
    LynnVB Member Posts: 24
    edited August 2018

    I have ALH and my oncologist indicated that for me the risk of Tamoxifen outweighed the benefits at this time. I receive 3D mammo and MRI.

  • ElsaJ
    ElsaJ Member Posts: 16
    edited August 2018

    Hi Lea, thanks for the response. My oncologist does recommend me to take Tamoxifen because she said i still have some (limited) ability to metabolize it so it is not completely wasted. She said it will still have some benefits (although not as much as if i were normal). She said i don;t have any other options for pre-menopause. Once I am post-menopause, then, she will switch me to raloxifene or exemestane. I am just unsure given everything that i have heard about the side effects.

  • Tmh0921
    Tmh0921 Member Posts: 714
    edited August 2018

    I was diagnosed with ADH in 2016 and my oncologist put me on Tamoxifen. However, I have a personal history of breast cancer (IDC stage 1B Dx In 1999 at age 27).

    This year I had another abnormal mammogram, and a core needle biopsy came back with a diagnosis of ALH. I’m having an excisional biopsy next week to make sure that’s all there is.


    At this point I’m pretty much on the Tamoxifen for life track....

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