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Topic: Does everyone with ADH take Tamoxifen?

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Aug 28, 2018 05:05PM

ElsaJ wrote:

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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Aug 28, 2018 10:38PM - edited Aug 28, 2018 10:50PM by Lea7777

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.


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.
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Aug 29, 2018 07:01AM Ingerp wrote:

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.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/18/2018 Taxol (paclitaxel) Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Aug 29, 2018 03:57PM LynnVB wrote:

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.

1/2017 -Biopsy results Focal Atypical Lobular Hyperplasia involving adnosis with calcification.
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Aug 30, 2018 12:30PM ElsaJ wrote:

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.

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Aug 30, 2018 06:36PM Tmh0921 wrote:

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....

First Dx at 27 years old in 1999, 2nd Dx 2018, 3rd Dx 2019... Current Oncotype: 26 Dx 12/7/1999, IDC, Left, 1cm, Stage IB, Grade 2, 0/15 nodes, ER+/PR+ Surgery 12/21/1999 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 1/30/2000 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/31/2000 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/4/2018 Lumpectomy: Left Dx 9/7/2018, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 5/31/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 8/5/2019 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/4/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/1/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Hormonal Therapy 3/24/2020 Femara (letrozole), Zoladex (goserelin) Surgery 7/15/2020 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant

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