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Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

Posted by EJ @elsajohnson, Aug 7, 2018

I am sorry if this is not the right forum. I know ADH is not cancer and this is a breast cancer forum, but I can't find another forum that may be more relevant.

I am wondering if there is anyone who is dealing with ADH or has been diagnosed with ADH that can share their experience. I was diagnosed a month ago. While I am relieved that I don't have cancer, I am confused with the radiology report that shows BI-RAD6 - surgical removal is recommended. I have seen a breast oncology surgeon and I don't think she took me seriously because I don't have cancer. It almost feels like I wasted her time seeing her because I don't have cancer. If ADH is no big deal, why BI-RAD 6 (which i understand is for biopsy proven malignancy). I also read up about ADH online and understand that with ADH, my risk for breast cancer is 4x. Should I not worry about it and just do annual check? Should i see another breast surgeon? Should I see an oncologist? Do I need genetic testing to better understand my risk? I feel like an impostor for even posting this on a breast cancer forum but I am genuinely confused and concerned. Any help will be greatly appreciated.

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Profile picture for cinzia80
cinzia80 | @cinzia80 | May 20, 2023
In reply to @maureenmckean "Oh I didn’t know you were in Italy! Push for a yearly MRI and a yearly..." + (show)
Profile picture for maureenmckean @maureenmckean

Oh I didn’t know you were in Italy! Push for a yearly MRI and a yearly mammogram- that is basically how they do it here in the states. So essentially every 6 months you are seen. My husband and I dream of moving to Europe! We have Italy, Malta, and Spain on our wish list

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How funny…my husband is American and dreams every day to come back to the US😅

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maureenmckean | @maureenmckean | May 20, 2023
In reply to @cinzia80 "Yes, I’m waiting to see what will be my plan. I honestly would have a double..." + (show)
Profile picture for cinzia80 @cinzia80

Yes, I’m waiting to see what will be my plan. I honestly would have a double mastectomy if they gave me a chance😒 But here in Italy it looks impossible unless you have a cancer or are positive for BRCA genes😖

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Oh I didn’t know you were in Italy! Push for a yearly MRI and a yearly mammogram- that is basically how they do it here in the states. So essentially every 6 months you are seen. My husband and I dream of moving to Europe! We have Italy, Malta, and Spain on our wish list

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1 reply
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cinzia80 | @cinzia80 | May 20, 2023
In reply to @maureenmckean "Glad it’s not cancer!! Now you should be checked every 6 months because I believe you..." + (show)
Profile picture for maureenmckean @maureenmckean

Glad it’s not cancer!! Now you should be checked every 6 months because I believe you are higher risk. Sorry about the slow recovery. Hope you’re back to normal soon!

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Yes, I’m waiting to see what will be my plan. I honestly would have a double mastectomy if they gave me a chance😒 But here in Italy it looks impossible unless you have a cancer or are positive for BRCA genes😖

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1 reply
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maureenmckean | @maureenmckean | May 20, 2023
In reply to @cinzia80 "Thank you @maureenmckean ! Biopsy went well. The recovery has been slower than what I thought,..." + (show)
Profile picture for cinzia80 @cinzia80

Thank you @maureenmckean !
Biopsy went well. The recovery has been slower than what I thought, I must say😅
I developed a sieroma but surgeon said everything is ok.
From the hystological report it looks like I don’t have ADH but columnar hyperplasia with a focal area of FEA.

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Glad it’s not cancer!! Now you should be checked every 6 months because I believe you are higher risk. Sorry about the slow recovery. Hope you’re back to normal soon!

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cinzia80 | @cinzia80 | May 20, 2023
In reply to @maureenmckean "Hoping the biopsy went well and you have gotten good news on the pathology!" + (show)
Profile picture for maureenmckean @maureenmckean

Hoping the biopsy went well and you have gotten good news on the pathology!

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Thank you @maureenmckean !
Biopsy went well. The recovery has been slower than what I thought, I must say😅
I developed a sieroma but surgeon said everything is ok.
From the hystological report it looks like I don’t have ADH but columnar hyperplasia with a focal area of FEA.

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1 reply
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elliejk | @elliejk | May 15, 2023
In reply to @maryanna9 "I am in the Seattle area with Fred Hutch etc (so major cancer center), but 8..." + (show)
Profile picture for maryanna9 @maryanna9

I am in the Seattle area with Fred Hutch etc (so major cancer center), but 8 years ago protocol only involved diagnostic mammograms for several years and then I was moved to yearly standard mammograms. Protocol has since changed and with ADH now I would have been given a baseline breast MRI and followed more closely. I asked for a review of protocols this past January and a diagnostic mammogram and MRI were scheduled for March. My cancer was found at that time.

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Wow I didn’t realize the protocol had changed hope all is well

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maryanna9 | @maryanna9 | May 15, 2023
In reply to @elliejk "So based on your ADH you were not put on additional screening via a high risk..." + (show)
Profile picture for elliejk @elliejk

So based on your ADH you were not put on additional screening via a high risk breast center?

Jump to this post

I am in the Seattle area with Fred Hutch etc (so major cancer center), but 8 years ago protocol only involved diagnostic mammograms for several years and then I was moved to yearly standard mammograms. Protocol has since changed and with ADH now I would have been given a baseline breast MRI and followed more closely. I asked for a review of protocols this past January and a diagnostic mammogram and MRI were scheduled for March. My cancer was found at that time.

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1 reply
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elliejk | @elliejk | May 15, 2023
In reply to @maryanna9 "I just recently had a breast cancer dx in the same location I had ADH excised..." + (show)
Profile picture for maryanna9 @maryanna9

I just recently had a breast cancer dx in the same location I had ADH excised 8 years ago. That puts me in the 15 percent of women who go on to have breast cancer. The pure mucinous cancer (2% of all breast cancers) was found on a diagnostic mammogram that happened only because I had read that inflammatory autoimmune disease increases your risk. I asked for my risk to be newly calculated (protocols have evolved but no one advised this) and moved on to advanced screening -diagnostic mammo, ultrasound and mri. My cancer was likely missed on yearly mammos as it is slow growing and I never missed one. I'm sharing not to scare anyone but rather to encourage people tp advocate for themselves when they have questions and concerns.

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So based on your ADH you were not put on additional screening via a high risk breast center?

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Chris, Volunteer Mentor | @auntieoakley | May 14, 2023
In reply to @debbie2721 "I found this information dated for the year 2023." + (show)
Profile picture for debbie2721 @debbie2721

I found this information dated for the year 2023.

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Hi @debbie2721 thank you for sharing this, it is important information. Just for my own edification, can you post a link where I can go read the article, I am very interested in this.🤓

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