1. < Breast Cancer

Atypical Ductal Hyperplasia (ADH) and taking an AI like Anastrozole

Posted by debbie2721 @debbie2721, Dec 27, 2022

I was recently diagnosed with atypical ductal hyperplasia. I had a stereostatic biopsy and then a lumpectomy. Fortunately I do not have cancer, but I was sent to an oncologist and he put me on anastrozole. I will be watched closely for 5 years. Does taking anastrozole guarantee that you won't get breast cancer?

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windyshores | @windyshores | Dec 28, 2022

We do not have enough information on your situation to respond, and outcome varies. How high was your estrogen responsiveness score? Did you have an Oncotype Dx test? Maybe with atypical hyperplasia you don't get these tests?

If you do not yet have cancer, I would get information from your doctor on this and maybe get a second opinion until you are sure of what you want to do.

REPLY
1 reply
debbie2721 | @debbie2721 | Dec 28, 2022
In reply to @windyshores "We do not have enough information on your situation to respond, and outcome varies. How high..." + (show)
@windyshores

We do not have enough information on your situation to respond, and outcome varies. How high was your estrogen responsiveness score? Did you have an Oncotype Dx test? Maybe with atypical hyperplasia you don't get these tests?

If you do not yet have cancer, I would get information from your doctor on this and maybe get a second opinion until you are sure of what you want to do.

Jump to this post

I wasn't told anything about a responsiveness estrogen score and I do not know if I had an Oncotype Dx test. These were not mentioned when I saw the oncologist.

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1 reply
tctredwell1 | @tctredwell1 | Dec 28, 2022
In reply to @debbie2721 "I wasn't told anything about a responsiveness estrogen score and I do not know if I..." + (show)
@debbie2721

I wasn't told anything about a responsiveness estrogen score and I do not know if I had an Oncotype Dx test. These were not mentioned when I saw the oncologist.

Jump to this post

Hi. It sounds like you need a second opinion. I called a cancer center for a second-opinion surgeon (whose testing found cancer in both breasts, not one!) and I recently went to see a second-opinion oncologist and what a difference! She spent time with me, went over test results (and explained them) and discussed possible treatments.

Please make the effort to get a second opinion and write down all your questions beforehand so you get the information you need. You deserve it.

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1 reply
leesal123 | @leesal123 | Dec 28, 2022

Hi @debbie2721 , I was diagnosed with ADH in February 2022. Estrogen scores were not done since it is not cancer. I too was referred to an oncologist, where it appears standard care is to prescribe either an AI or tamoxifen for ADH and/or ALH. These meds can possibly reduce your risk of BC but I was told there are no guarantees and honestly a doctor should go through all of your risk factors with you to determine the correct treatment path. I tried Anastrozole for 17 days before having bad side effects( racing heart, palpitations- no previous heart issues). After a long summer of what appeared to be withdrawal from the meds- anxiety, hair falling out, racing heart things have settled down, but now dealing with vaginal atrophy/dryness. My past oncologist would take days to return calls about side effects and would then tell me to call my PCP who would then tell me to call the oncologist since they did not prescribe. Needless to say, I have switched all care. My new breast doctor appears to be individualizing my care based on my medical history. I am on a 6-month monitoring with mammograms and every other year an MRI. (I go in February for my 1-year check-up and the apprehension with that is nerve-wracking). I made lifestyle changes this year- I have switched to a plant-based diet, exercise daily, weights 3x a week, and have lost 40 lbs since last December thus lowering my BMI fo 6 points. At this time no meds, but if things change then we reevaluate and look at tamoxifen and any other course of action that may be needed. I also had genetic testing through a clinical study I am part of which came back all negative. Please know not everyone reacts poorly to meds. so do not let my experience scare you off of them. Do not be afraid to get a 2nd or even 3rd opinion, and never be afraid to ask questions. I write everything down before I go in and my new doctor patiently listens to all of them. Positive thoughts your way!

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1 reply
windyshores | @windyshores | Dec 28, 2022

If you don't know whether your atypical dysplasia is hormone-responsive, how do you know hormonal meds would help prevent cancer? I don't know much about this situation.

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1 reply
debbie2721 | @debbie2721 | Dec 28, 2022
In reply to @leesal123 "Hi @debbie2721 , I was diagnosed with ADH in February 2022. Estrogen scores were not done..." + (show)
@leesal123

Hi @debbie2721 , I was diagnosed with ADH in February 2022. Estrogen scores were not done since it is not cancer. I too was referred to an oncologist, where it appears standard care is to prescribe either an AI or tamoxifen for ADH and/or ALH. These meds can possibly reduce your risk of BC but I was told there are no guarantees and honestly a doctor should go through all of your risk factors with you to determine the correct treatment path. I tried Anastrozole for 17 days before having bad side effects( racing heart, palpitations- no previous heart issues). After a long summer of what appeared to be withdrawal from the meds- anxiety, hair falling out, racing heart things have settled down, but now dealing with vaginal atrophy/dryness. My past oncologist would take days to return calls about side effects and would then tell me to call my PCP who would then tell me to call the oncologist since they did not prescribe. Needless to say, I have switched all care. My new breast doctor appears to be individualizing my care based on my medical history. I am on a 6-month monitoring with mammograms and every other year an MRI. (I go in February for my 1-year check-up and the apprehension with that is nerve-wracking). I made lifestyle changes this year- I have switched to a plant-based diet, exercise daily, weights 3x a week, and have lost 40 lbs since last December thus lowering my BMI fo 6 points. At this time no meds, but if things change then we reevaluate and look at tamoxifen and any other course of action that may be needed. I also had genetic testing through a clinical study I am part of which came back all negative. Please know not everyone reacts poorly to meds. so do not let my experience scare you off of them. Do not be afraid to get a 2nd or even 3rd opinion, and never be afraid to ask questions. I write everything down before I go in and my new doctor patiently listens to all of them. Positive thoughts your way!

Jump to this post

Hi leesal123,
Thank you for responding and sharing your experiences. I am taking anastrosal at night so I don't notice any side effects.
I go back to see my oncologist in February so he can see how I am tolerating the medication. I will have a mammogram every 6 months.
I try to walk 5miles daily and I try to eat fruits and veggies. I don't think doctors explain things very well and I was caught off guard so I didn't have time to even think of questions to ask.
I hope your new doctor will have a plan for your health. I wish you the best. Thank you.

REPLY
debbie2721 | @debbie2721 | Dec 28, 2022
In reply to @tctredwell1 "Hi. It sounds like you need a second opinion. I called a cancer center for a..." + (show)
@tctredwell1

Hi. It sounds like you need a second opinion. I called a cancer center for a second-opinion surgeon (whose testing found cancer in both breasts, not one!) and I recently went to see a second-opinion oncologist and what a difference! She spent time with me, went over test results (and explained them) and discussed possible treatments.

Please make the effort to get a second opinion and write down all your questions beforehand so you get the information you need. You deserve it.

Jump to this post

Hi tctreadwell1,
Thank you for the advice. I will make sure I write down questions before my next oncology appointment. If I am not satisfied I will definitely get a second opinion. Thank you for taking the time to reply to my question.

REPLY
1 reply
tctredwell1 | @tctredwell1 | Dec 28, 2022
In reply to @debbie2721 "Hi tctreadwell1, Thank you for the advice. I will make sure I write down questions before..." + (show)
@debbie2721

Hi tctreadwell1,
Thank you for the advice. I will make sure I write down questions before my next oncology appointment. If I am not satisfied I will definitely get a second opinion. Thank you for taking the time to reply to my question.

Jump to this post

No problem. Please let us know how your next appointment goes.
Take care.

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lisajoann | @lisajoann | Dec 29, 2022

There are no guarantees, However, proof is out there that these meds do work!
Research all you can and take your medical care into your own hands!
Question your oncologist if you have questions and if he/she doesn't want to answer you, move on!!!!
We are here to listen and try to encourage and guide…but we are NOT doctors.
Sending prayers and hugs♥️

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