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ADH and low dose Tamoxifen

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I’m 65 years old and have had normal mammograms until this year. I had a lumpectomy last month after a biopsy indicated atypical ductal hyperplasia. Because of this and the fact that my mother, her sister, and her aunt all had breast cancer, I am now considered high risk and my oncologist is recommending low dose Tamoxifen for 3 years. I’ve been very healthy up to this point and I am on no prescription medication. The stories I’ve heard about side effects from Tamoxifen make me nervous. Can anyone offer your experience with this course of treatment? Thanks so much!

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  • harley07
    harley07 Member Posts: 318
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    @booknerd - welcome! I’m sorry you have to join us but you will find this site has a wealth of information. Your history is very similar to mine. My mom, her sister and her aunt had breast cancer. In 2020 when I was 63 I had a biopsy for ADH which determined I had invasive ductal carcinoma so I had a 2nd lumpectomy to get clear margins.

    I took anastrozole for a little over 2 years so I can’t speak directly to taking Tamoxifin but one thing to keep in mind is that side effects are unique to each individual. You may have none, mild or severe side effects. You can also stop taking Tamoxifin if you are unable to tolerate the side effects. I encourage you to discuss your concerns with your doctor.

    One other thing given your family history - have you had or do you plan to have genetic testing? While a minority of breast cancers are the result of a genetic mutation it is another data point to consider.

    Good luck!

  • moderators
    moderators Posts: 8,287
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    Welcome to BreastCancer.org, @booknerd. We're sorry for what brings you here, but we are glad that you found our supportive community! We have some informative articles, including one on Tamoxifen—though we're sure you likely have read it already, we'll provide a link for it just in case.

    In addition to the forums, we also offer free weekly virtual meet-ups over Zoom, where you can meet others that are going through similar experiences. You actually end up learning a lot through hearing others' stories, and we certainly have a number of the women in our In Treatment groups right now that are on Tamoxifen. You could also ask for their experiences there! To see the date/time and register, visit this page:

  • booknerd
    booknerd Member Posts: 2
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    @harley07 Thanks so much for your reply. I haven’t had genetic testing, but my mom has. The only finding noted was a variant of unknown significance in the ATM gene. My doctor is advising against aromatase inhibitors because I have mild osteoporosis. I’m definitely doing as much research as I can. My daughter is a chemotherapy IV tech and I’m also consulting with the pharmacists she works with.