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.

My original diagnosis was ADH and after biopsy it was changed to stage 1 cancer. (Biopsy was 4 days after the original mammogram found a small suspicious area).
I was taken to ultrasound immediately when mammogram showed something abnormal—same day. I’m not sure what the BI-RAD 6 means, but I met with a breast surgeon once pathology of biopsy showed cancer (2 days after biopsy was performed) I had a lumpectomy 3 weeks after that and radiation a week after the surgery. In hindsight I might have kept calm and researched some more…congrats to you.
Have you had a biopsy and heard results yet?

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@icya2282

My original diagnosis was ADH and after biopsy it was changed to stage 1 cancer. (Biopsy was 4 days after the original mammogram found a small suspicious area).
I was taken to ultrasound immediately when mammogram showed something abnormal—same day. I’m not sure what the BI-RAD 6 means, but I met with a breast surgeon once pathology of biopsy showed cancer (2 days after biopsy was performed) I had a lumpectomy 3 weeks after that and radiation a week after the surgery. In hindsight I might have kept calm and researched some more…congrats to you.
Have you had a biopsy and heard results yet?

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Thanks for the reply. Yes I already had the core needle biopsy about a month ago (after diagnostic mammogram that showed microcalcifications). And from that, the pathology report shows ADH. Based on that, the radiologist report indicated final finding as BI-RAD 6 – surgical removal recommended. This was what prompted me to see a breast surgeon in the first place

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I was actually considering posting similar questions on this forum but wasn't sure it would be the right place. They found microcalcifications in a routine mammogram 3 yrs ago, I was put on a schedule of having a mammogram every 6 mths, there had been no changes, so a year ago I was released to going back to a yearly mammo. I had the mammo beginning of July, they found new microcalcifications with a dense area near them, did an ultrasound the same day, and had an opening that day to do a core needle biopsy so I took it. Didn't want to wait. The local lab had to send the biopsy to Mayo to examine and the dx was ADH. The radiologist recommended a MRI of both breasts, to make sure there were no other areas of concern, before doing a surgical excision to remove the remaining area. He referred me to a surgeon who specializes in breast cancer surgery. I had the surgery 2 wks ago, they biopsied the tissue removed and found they got all of the ADH and no cancer cells were found. I was so thankful. I asked my surgeon about genetic testing, she referred me to a genetecist. I just had the appt with him 8/6 and was told even w/o doing the testing, based upon my personal history and mostly due to the ADH dx, my chance of breast cancer went up from 12%(avg risk for my age-47) to 41%. He explained based upon that % I will require follow ups every 6mths (which the Radiologist had already indicated in his report I should have follow up MRI in 6 mos) but it also opened up other options such as bilateral masectomy or medication to lessen the chance of further changes. I am pre-menopausal and my surgeon recommended against the drugs. I am wondering if anyone else has had ADH, but not cancer, and decided to have a preventative masectomy?

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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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Thank you, @Kanaazperiera.
I'm happy to be part of this forum.
I think there's a consideration to be made regarding how early the condition can be detected now with the incredible imaging available… and possible overdiagnosis and subsequent treatments including mastectomies.
Protocol tells our surgeons what steps to take based on the pathology, size. etc but I'd like to know if anyone has chosen to monitor the situation rather than rush to surgery and/or radiation.
And also how important is Tamoxifen to premenopausal women that have chosen surgery and radiation in the case of stage 1 cancer with clean margins and no involvement to lymph nodes after snb results?

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@elsajohnson @ckf1317 @icya2282, I’d like to invite you to view these discussions in the Breast Cancer group; feel free to join in and post your questions wherever you feel comfortable:
– Mastectomy and Reconstruction (or not ) https://connect.mayoclinic.org/discussion/mastectomy-1/
– What problems have you had with Tamoxifen? https://connect.mayoclinic.org/discussion/what-problems-have-you-had-with-tamoxifen/
– Video Q&A about Breast Cancer https://connect.mayoclinic.org/webinar/video-qa-about-breast-cancer/

I'm tagging @brianphilip @cindylb @kat9606 @eliseb @diane12 @rosiemolano @cjnyseth @jcolby who've shared their experiences with tamoxifen.

I also thought you might be interested in reading about "Precision medicine for breast cancer"– https://www.mayoclinic.org/tests-procedures/precision-medicine-breast-cancer/about/pac-20385240
Would this "targeted therapy" approach be something that you could consider?

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@kanaazpereira

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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Hi Kanaz, thanks so much for the reply and the confirmation that I am in the right forum. I can’t tell you how much that means to me. Ever since my diagnosis, I have felt that I am I this twilight zone: not cancer, but benign and yet not really entirely benign. I don’t want to people to think that I am one of those who makes a big deal of a small health issue, but at the same time, based on what I read about ADH, I am not exactly sure ADH is just something that is no big deal.

Thanks also for the link on the Bi-RADS meaning. That was my understand also re: BI-RADS 6, which is supposed to be biopsy proven malignancy. This is why I am confused to see this on my radiologist report after the CNB with ADH finding. No, I haven’t seen an oncologist yet. Since I don’t have cancer, can I see an oncologist? Will an oncologist see me since I don’t really have cancer?

REPLY
@kanaazpereira

@elsajohnson @ckf1317 @icya2282, I’d like to invite you to view these discussions in the Breast Cancer group; feel free to join in and post your questions wherever you feel comfortable:
– Mastectomy and Reconstruction (or not ) https://connect.mayoclinic.org/discussion/mastectomy-1/
– What problems have you had with Tamoxifen? https://connect.mayoclinic.org/discussion/what-problems-have-you-had-with-tamoxifen/
– Video Q&A about Breast Cancer https://connect.mayoclinic.org/webinar/video-qa-about-breast-cancer/

I'm tagging @brianphilip @cindylb @kat9606 @eliseb @diane12 @rosiemolano @cjnyseth @jcolby who've shared their experiences with tamoxifen.

I also thought you might be interested in reading about "Precision medicine for breast cancer"– https://www.mayoclinic.org/tests-procedures/precision-medicine-breast-cancer/about/pac-20385240
Would this "targeted therapy" approach be something that you could consider?

Jump to this post

Hi Kananz, thanks again. Interesting info on targeted therapy? Will this be something that I need to discuss with a breast surgeon? My primary gynecologist? Or an oncologist?

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Reply to all with ADH. Almost five years ago I was diagnosed with ADH and Atypical Lobular Hyperplasia. My mammogram at the time showed microcalicifications. No lumps because that area was lobular and not ductal (lobular tends to make more 'lines' in the breast vs. lumps…tricky stuff.) I had a biopsy and lumpectomy of the area was recommended. The pathology showed ALH. I was put on a six month schedule of mammograms which I followed closely. They called my condition a Stage 0 cancer…as in you might get cancer and you might not. Almost three years ago I was diagnosed with Stage 1 cancer and had a bi lateral mastectomy. Luckily my cancer had not spread to the lymph nodes but it was invasive.
My cancer was harder to follow because ultimately it was of the Lobular type and that doesn't make lumps that are detectable all the time via mammogram. I didn't find my cancer via mammogram (in fact it wasn't seen on the mammogram the day of the mastectomy)…..because of the lobular type it was a small area growing in a line of cancer cells (I'm sure that's not entirely medically accurate, but the best way I can describe it). My point being this…………
……with ADH and ALH you are finding suspicious breast changes in the earliest stages and it may or may not become invasive and may or may not need further treatment. In my case the Stage 0 was in my left breast and the Stage I Invasive was in the right (again, peculiar to Lobular…it can more easily form in both breasts). I chose a bi lateral mastectomy because I feared not catching the cancer at a manageable stage and in my case that was the best decision. Please make sure you have doctors who take your concerns seriously and insist on complete testing which includes MRI's to detect even smaller changes. I am grateful for the doctors I had with my ADH and ALH because they impressed upon me my increased risk and although I'm sorry I was one of the people who ended up with cancer, I am also lucky that my cancer was caught as early as it was.
My physical therapist, post mastectomy, was a quite young woman who opted for a bilateral mastectomy with ADH. She wanted to completely eliminate her risk of invasive cancer. It was a bold decision but looking back I would have had my breasts removed at my first diagnosis as well, to avoid the worry and fear that one goes through each six months. That's just one opinion. After all, I hoped I wouldn't have more issues and invasive cancer. It is understandable that you are very worried. It's a great 'unknown' and making these decisions is truly hard.
Find doctors you trust, research as much as you can and continue to reach out. No harm in waiting another six months or even a year and continue to push for the best testing you can get. I hope you're one of the lucky ones who ends up with no further problems but if you're not comfortable with the treatment, testing or answers you get from your doctors…….find new ones and make sure you feel assured that your situation is being closely monitored.
Hugs to you!

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……and…….I was put on Tamoxifen with my ALH and ADH diagnosis post lumpectomy but unfortunately I don't do well at all with most prescription medicines and Tamoxifen was no exception. I was unable to take the Tamoxifen due to serious side effects. Perhaps had I been able to tolerate the pills I might have avoided the Stage 1 diagnosis, perhaps not. The medications are worth a try if they can help you avoid developing a full blown cancer.

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@kanaazpereira

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/

Jump to this post

Good question @elsajohnson. "Since I don’t have cancer, can I see an oncologist? Will an oncologist see me since I don’t really have cancer?"

@cindylb, when you were diagnosed with ADH at what point were you referred to an oncologist?

REPLY
@kanaazpereira

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/

Jump to this post

Hello!
I was diagnosed with micro-calcifications at my regular, yearly mammogram and referred by the Sally Jobe mammography center to an oncologist who recommended a biopsy. From the biopsy which showed ADH and ALH (ALH more predominantly) I was referred to a surgeon.. The surgeon did a lumpectomy and with that extra tissue they were able to determine that I had Stage "o" cancer. Following lumpectomy all my follow up care was with my oncologist who recommended Tamoxifen (which I couldn't use without serious side effects) and due to that 'failure' she referred me to a homeopathic doctor for diet, nutrition, etc. I highly recommend that care as well. I learned a lot about how to improve my health and what I hoped might stop the breast changes. Unfortunately I developed invasive Lobular Carcinoma within two years and following my bi lateral mastectomies I got the full picture of my breast 'health', which was not good. I had invasive lobular in just one spot but also atypical ductal in many areas, atypical lobular in many areas, cysts and all sorts of bad stuff pretty much everywhere. It was only a matter of time before more cancers would spring up. My decision to be very aggressive with my cancer didn't come with my initial ADH and ALH diagnosis. I had benign lumps removed over the years, cysts, multiple hormone issues throughout my life and various risk factors.
Some doctors consider ADH and ALH as 'cancer' some do not. You don't want to over treat a patient but I am glad I was on top of this because I caught my cancer before it had spread and before radiation or chemo were even recommended or considered. The surgery was the easy part of my decision making. The other treatments, including aromatase drugs were the more difficult part for me. I don't tolerate them well. I think a consult with an oncologist to discuss options for treatment makes complete sense at the early stages.

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