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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I was given my biopsy results today, so I guess this is the day I was diagnosed. Primary is referring me to a breast specialist. What happens next? Do I have to have surgery to remove this?

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@windyshores

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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I was diagnosed with ADH/LCIS after biopsy just before Christmas. I saw a breast cancer specialist and am scheduled for lumpectomy in a few weeks. I have had genetic testing a few years ago (which the type I had didn’t tell where I was on the hormone receptive bell curve for my check 2 positive genetic marker). Dr wants me to get another genetic test by Myriad or Miriam (I think that is the name?) Supposedly this will tell doctor whether taking a mini tamoxifen (5mg) or regular 10 mg tamoxifen will be appropriate course of action for 5 years as well as having the 6 month alternating 3D mammo and mri plan in place. I had a conference call with a high risk breast cancer counselor who ran my numbers on potentially getting breast cancer. Based on my family history, biopsy results and genetic check 2 marker, they tell me I am at a 63.3 % chance to get breast cancer in my lifetime. I have been praying and constantly in deep thought about getting a prophylactic mastectomy to give myself a 99% chance I won’t get breast cancer. I have a 15 year old and am 52 years old. Based on what I’ve been through, cost, stress, time, worry over the past 3 weeks, I’m weary imagining the remainder of my life with the watch and wait and careful screening approach. Hubby thinks I’m jumping the gun to consider the drastic measure. Frankly I am so confused. Doctor wants to do lumpectomy to ensure there is no cancer that might have been undetected in biopsy. Low chance I think, and so the waiting game continues…
I really like the breast surgeon I’m seeing now. Definitely I would recommend anyone switch if it’s not a good fit. I switched from an another doc whom I was not fond of his bed side manner and personality 10 years ago. I had gone in for nipple discharge and doc found that was found to not be a concern.
Anyone else talking to their doc about prophylactic mastectomy following ALH/LCIS diagnosis thus far? Thanks I’m advance!

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@suzyattendorn

I was given my biopsy results today, so I guess this is the day I was diagnosed. Primary is referring me to a breast specialist. What happens next? Do I have to have surgery to remove this?

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Your results from biopsy are LDH or LCIS? They will most likely want to do lumpectomy. That is what my doc has set me up for. They need to be sure there isn’t more involved than what they found in biopsy. I hope they get you on the fast track to getting answers you will need to make your decision with your doc for your customized plan that you and doc are comfortable with.

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@hobo

I was diagnosed with ADH/LCIS after biopsy just before Christmas. I saw a breast cancer specialist and am scheduled for lumpectomy in a few weeks. I have had genetic testing a few years ago (which the type I had didn’t tell where I was on the hormone receptive bell curve for my check 2 positive genetic marker). Dr wants me to get another genetic test by Myriad or Miriam (I think that is the name?) Supposedly this will tell doctor whether taking a mini tamoxifen (5mg) or regular 10 mg tamoxifen will be appropriate course of action for 5 years as well as having the 6 month alternating 3D mammo and mri plan in place. I had a conference call with a high risk breast cancer counselor who ran my numbers on potentially getting breast cancer. Based on my family history, biopsy results and genetic check 2 marker, they tell me I am at a 63.3 % chance to get breast cancer in my lifetime. I have been praying and constantly in deep thought about getting a prophylactic mastectomy to give myself a 99% chance I won’t get breast cancer. I have a 15 year old and am 52 years old. Based on what I’ve been through, cost, stress, time, worry over the past 3 weeks, I’m weary imagining the remainder of my life with the watch and wait and careful screening approach. Hubby thinks I’m jumping the gun to consider the drastic measure. Frankly I am so confused. Doctor wants to do lumpectomy to ensure there is no cancer that might have been undetected in biopsy. Low chance I think, and so the waiting game continues…
I really like the breast surgeon I’m seeing now. Definitely I would recommend anyone switch if it’s not a good fit. I switched from an another doc whom I was not fond of his bed side manner and personality 10 years ago. I had gone in for nipple discharge and doc found that was found to not be a concern.
Anyone else talking to their doc about prophylactic mastectomy following ALH/LCIS diagnosis thus far? Thanks I’m advance!

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Yes ADH here. Planning on skipping meds and getting mastectomy. Want to do the best I can to avoid BC

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I don't know what LDH or LCIS is. But I am scheduled to see the surgeon in a few days. I want this done!!
Thanks for responding.

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I also had ADH. My surgeon said it’s high risk benign. So I also had lumpectomy to remove it. But no need for further treatment.

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@hobo

I was diagnosed with ADH/LCIS after biopsy just before Christmas. I saw a breast cancer specialist and am scheduled for lumpectomy in a few weeks. I have had genetic testing a few years ago (which the type I had didn’t tell where I was on the hormone receptive bell curve for my check 2 positive genetic marker). Dr wants me to get another genetic test by Myriad or Miriam (I think that is the name?) Supposedly this will tell doctor whether taking a mini tamoxifen (5mg) or regular 10 mg tamoxifen will be appropriate course of action for 5 years as well as having the 6 month alternating 3D mammo and mri plan in place. I had a conference call with a high risk breast cancer counselor who ran my numbers on potentially getting breast cancer. Based on my family history, biopsy results and genetic check 2 marker, they tell me I am at a 63.3 % chance to get breast cancer in my lifetime. I have been praying and constantly in deep thought about getting a prophylactic mastectomy to give myself a 99% chance I won’t get breast cancer. I have a 15 year old and am 52 years old. Based on what I’ve been through, cost, stress, time, worry over the past 3 weeks, I’m weary imagining the remainder of my life with the watch and wait and careful screening approach. Hubby thinks I’m jumping the gun to consider the drastic measure. Frankly I am so confused. Doctor wants to do lumpectomy to ensure there is no cancer that might have been undetected in biopsy. Low chance I think, and so the waiting game continues…
I really like the breast surgeon I’m seeing now. Definitely I would recommend anyone switch if it’s not a good fit. I switched from an another doc whom I was not fond of his bed side manner and personality 10 years ago. I had gone in for nipple discharge and doc found that was found to not be a concern.
Anyone else talking to their doc about prophylactic mastectomy following ALH/LCIS diagnosis thus far? Thanks I’m advance!

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I’m in similar boat ADH diagnosis in Nov 2022. I think I’m going to pursue prophylactic mastectomy. I want to do everything I can to avoid getting BC.

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@elliejk

I’m in similar boat ADH diagnosis in Nov 2022. I think I’m going to pursue prophylactic mastectomy. I want to do everything I can to avoid getting BC.

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ELLIEJK,
Oh man! I’m proud of you for being bold and getting in front of it. I’ve had numerous BC docor opinions. I had a lumpectomy scheduled on Tues. I cancelled it. I’m terrified to make the wrong choice but I’m TOTALLY 1000% with you!! I’m just afraid to make my final choice. May I ask if you are BRCA or chek2 positive? I’m chek2 positive and have dense breast tissue and biopsy showed ALH/bordering on LCIS. Genetic counselors tell me I have a 67% chance of BC in my lifetime factoring in everything. Doc#1 wants to do lumpectomy to ensure there’s not cancer. Then decide from there. Doctor # 2 wants a current MRI to see if there is anything else suspect before I decide which path to chose and understands why I strongly lean toward prophylactic double mastectomy. Did your docs advise your choice, or you (like me) don’t want to screw around and wait? I will do one or both surgeries. I know in my heart what I want to do as I have a high level of fear of reoccurrence of another area and possibly find it too late!! Do you have family and doctor support? I’m all over the place but leaning toward mastectomy. Any advice, or similar circumstance as me? Have you had the surgery yet? Did you do reconstruction at the same time? I’m so appreciative of your words. Also, did your insurance approve? I haven’t explored that part yet. Not that it’s all about money—but it does factor into my decision. I’m not sure if I would have to have lumpectomy before they’d approve double mast.

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@hobo

ELLIEJK,
Oh man! I’m proud of you for being bold and getting in front of it. I’ve had numerous BC docor opinions. I had a lumpectomy scheduled on Tues. I cancelled it. I’m terrified to make the wrong choice but I’m TOTALLY 1000% with you!! I’m just afraid to make my final choice. May I ask if you are BRCA or chek2 positive? I’m chek2 positive and have dense breast tissue and biopsy showed ALH/bordering on LCIS. Genetic counselors tell me I have a 67% chance of BC in my lifetime factoring in everything. Doc#1 wants to do lumpectomy to ensure there’s not cancer. Then decide from there. Doctor # 2 wants a current MRI to see if there is anything else suspect before I decide which path to chose and understands why I strongly lean toward prophylactic double mastectomy. Did your docs advise your choice, or you (like me) don’t want to screw around and wait? I will do one or both surgeries. I know in my heart what I want to do as I have a high level of fear of reoccurrence of another area and possibly find it too late!! Do you have family and doctor support? I’m all over the place but leaning toward mastectomy. Any advice, or similar circumstance as me? Have you had the surgery yet? Did you do reconstruction at the same time? I’m so appreciative of your words. Also, did your insurance approve? I haven’t explored that part yet. Not that it’s all about money—but it does factor into my decision. I’m not sure if I would have to have lumpectomy before they’d approve double mast.

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I had lumpectomy to rule out any hidden cancers and thank God none were found. I’m not BRCA positive but have strong family history which puts my risk very similar to yours. Met with an oncologist last week and walked her through my logic- drugs are inconclusive on helping ADH and the side effects are awful so I don’t want that. Don’t want to just wait and see and she said she thought I was making a solid choice. Meet with reconstruction surgeon next week. So far all docs supportive and basically have said that patients make the best decisions for themselves. Insurance shouldn’t be a barrier given my high risk is what I’ve been told.

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Ok. We got this!! Do you think I should do lumpectomy too? Or cut yo the chase?! I’ve met with plastic surgeon (who works with doc #2). They’ve taken me through preliminaries until I decide whether to sign on the dotted line. I like you. You are smart!! I’m drawing inspiration from you. It’s like I know what I need to do, but it’s a big decision. What I don’t want is to look back and say, “I wish I had…”

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