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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.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

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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)
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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)
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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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maureenmckean | @maureenmckean | May 14, 2023
In reply to @cinzia80 "Hi @tigerjulie , I’m in your situation. I’ve been scheduled fir a surgical biopsy next week...." + (show)
Profile picture for cinzia80 @cinzia80

Hi @tigerjulie ,
I’m in your situation.
I’ve been scheduled fir a surgical biopsy next week.
After a diagnosis of ADH they want ti rule out the possibility of underlying DCIS or invasive tumors.
How did your surgery go?

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

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dinora08 | @dinora08 | May 8, 2023
In reply to @kanaazpereira "Welcome to Connect @elsajohnson @ckf1317 @icya2282. This is absolutely the right group, and I'm so glad..." + (show)
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Welcome to Connect @elsajohnson @ckf1317 @icya2282.
This is absolutely the right group, and I'm so glad you've joined this incredible community. According to the American Cancer Society, women with Atypical Ductal Hyperplasia (ADH) are at a higher risk to develop breast cancer as women without it. But they also note that most women with ADH don’t develop breast cancer. Still, having ADH means you need to regularly follow up with your doctor for breast cancer screenings. Here's more detailed information from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/atypical-hyperplasia/symptoms-causes/syc-20369773

You are not alone in experiencing the frustration of not being taken seriously by your doctors; if there is one thing I've learned from Connect members it's not give up until you find the right physician who can help you in the best possible way. With regard to BI-RAD, here's what I found:

Doctors use a standard system to describe mammogram findings and results. This system (called the Breast Imaging Reporting and Data System or BI-RADS) sorts the results into categories numbered 0 through 6.
Definition of BI-RAD 6: Known biopsy-proven malignancy – Appropriate action should be taken. https://www.cancer.org/cancer/breast-cancer/screening-tests-and-early-detection/mammograms/understanding-your-mammogram-report.html
Are you able to get a second opinion from an oncologist, @elsajohnson?

I'm tagging @roch as she recently shared her diagnosis of focal ADH, and I'd also like to invite @violetita07 @cindylb @diane12 @casualobserver to join in with their thoughts about preventive/prophylactic mastectomy. You can view the discussion taking place on Connect, here:
https://connect.mayoclinic.org/discussion/bilateral-mastectomy-or-not/

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I was diagnosed last year with atypical ductal hyperplasia had breast excisional biopsy done. However, after that there is no follow up every 6 months and no medication given. Wonder if the right path is to follow or should I get a second opinion. I'm just concerned because I have read a lot about it, and I see that it is recommended to take medication for 5 years. I would appreciate any advice thank you.

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maryanna9 | @maryanna9 | May 7, 2023

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.

REPLY
1 reply
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elliejk | @elliejk | May 6, 2023
In reply to @maureenmckean "Good luck! It’s so stressful. I felt like my life was on pause until I knew..." + (show)
Profile picture for maureenmckean @maureenmckean

Good luck! It’s so stressful. I felt like my life was on pause until I knew it wasn’t cancer. My recovery was fine. First day or two sore. I could have gone back to work if I had a desk job. I ended up taking a week due to my job.

I will say a prayer and send positive vibes for you on May 9th

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I only took day of surgery off. But I have a desk job.

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maureenmckean | @maureenmckean | May 6, 2023
In reply to @cinzia80 "Hi @maureenmckean , I’m in more or less the same situation. How did the excisional biopsy..." + (show)
Profile picture for cinzia80 @cinzia80

Hi @maureenmckean ,
I’m in more or less the same situation.
How did the excisional biopsy go?

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Biopsy and lumpectomy were fine. They did not find anything further in the lumpectomy luckily

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maureenmckean | @maureenmckean | May 6, 2023
In reply to @cinzia80 "Thank you for your reply! I hope I’ll have your luck. I’m scheduled to have surgery..." + (show)
Profile picture for cinzia80 @cinzia80

Thank you for your reply! I hope I’ll have your luck.
I’m scheduled to have surgery on May 9th.
How was your recovery from surgery?

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Good luck! It’s so stressful. I felt like my life was on pause until I knew it wasn’t cancer. My recovery was fine. First day or two sore. I could have gone back to work if I had a desk job. I ended up taking a week due to my job.

I will say a prayer and send positive vibes for you on May 9th

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cinzia80 | @cinzia80 | May 5, 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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Article of September 2022
On the Mayo Clinic website.
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