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.

@sugardoll4

Hello, new to this forum and diagnosis. Just recently, a MRI found a non-mass enhancement in my left breast. fast forward to MRI guided biopsy, my diagnosis is atypical ductal hyperplasia with PASH. My initial symptoms were breast pain and bloody nipple discharge only when i "expressed" it. I found the discharge because my nipple was very painful initially and currently remains painful. My question is do my symptoms match up with my diagnosis or could something still be missing? I have a surgical consult in a few weeks for next steps. Thank you!

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@sugardoll4 Hi – In June 2018 during my annual mammogram screening the radiologist requested magnified views where he discovered micro-calcifications in my right breast that appeared to be vascular (linear) and scheduled a recheck for 6 months later. At the recheck in December 2018 (again w/ mag views) he could then see a cluster of micro-calcifications that presented differently than the vascular ones. I had a stereotactic biopsy and I received the diagnosis of atypical ductal hyperplasia. I had no symptoms or pain – all was discovered during routine screening. I continued on to have the surgical biopsy to rule out DCIS which was negative. I am now facing prophylactic medication because of my high risk category for developing breast cancer.

I understand that PASH is a benign condition. Does your doctor think that the pain and discharge is from the PASH? I am assuming your radiology report advises a surgical biopsy for the ADH – mine did. The surgical consult is the next logical step. When do you go for that?

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Hello, new to this forum and diagnosis. Just recently, a MRI found a non-mass enhancement in my left breast. fast forward to MRI guided biopsy, my diagnosis is atypical ductal hyperplasia with PASH. My initial symptoms were breast pain and bloody nipple discharge only when i "expressed" it. I found the discharge because my nipple was very painful initially and currently remains painful. My question is do my symptoms match up with my diagnosis or could something still be missing? I have a surgical consult in a few weeks for next steps. Thank you!

REPLY
@sugardoll4

Hello, new to this forum and diagnosis. Just recently, a MRI found a non-mass enhancement in my left breast. fast forward to MRI guided biopsy, my diagnosis is atypical ductal hyperplasia with PASH. My initial symptoms were breast pain and bloody nipple discharge only when i "expressed" it. I found the discharge because my nipple was very painful initially and currently remains painful. My question is do my symptoms match up with my diagnosis or could something still be missing? I have a surgical consult in a few weeks for next steps. Thank you!

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Hi @sugardoll4, welcome to Connect. You'll notice that I moved your message to this existing discussion about atypical ductal hyperplasia (ADH). I did this so that you can meet other members like @elsajohnson @cindylb @elsie37 @sushilady1 @confused76 @khauff @amy11559 and more who are also talking about ADH, choices and what to expect. Click VIEW & REPLY to read through past messages.

You may also be interested in this discussion:
– High risk, NOT from BRCA but from typia, such as ALH, ADH, LCIS https://connect.mayoclinic.org/discussion/high-risk-not-from-brca-but-from-typia-such-as-alh-adh-lcis/

Sugardoll, did you talk to your oncologist or surgeon about your concerns that the symptoms you're experiencing (nipple discharge and pain) not matching the diagnosis?

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@sugardoll4

Hello, new to this forum and diagnosis. Just recently, a MRI found a non-mass enhancement in my left breast. fast forward to MRI guided biopsy, my diagnosis is atypical ductal hyperplasia with PASH. My initial symptoms were breast pain and bloody nipple discharge only when i "expressed" it. I found the discharge because my nipple was very painful initially and currently remains painful. My question is do my symptoms match up with my diagnosis or could something still be missing? I have a surgical consult in a few weeks for next steps. Thank you!

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Hello Sugardoll4 I am glad you found this board. So if I am reading correctly you have an upcoming appointment with a surgeon? They will discuss surgical excision of the area to make sure there is nothing else hiding as with a diagnoses of ADH there is a possibility of having cancer cells hiding so they will do a lumpectomy to confirm the diagnoses. I would definitely discuss the symptoms you are and were having with the doctor.

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My Mom who is 83 years old was diagnosed with ADH last week after two mammograms and a stereotactic biopsy. Her doctor recommended a follow up excision surgery to remove the tissues surrounding the biopsy site on her left breast. But my Mom doesn’t want to go through the excision. The doctor then recommended a follow up mammogram in 6 months. Considering her age, is my mom making the right decision? She is pretty healthy otherwise, no other health issues. She can handle the Excision surgery easily. How do I convince her to do the excision surgery to rid of ADH tissues or to rule out cancer now?

Liked by cindylb

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Hello Jzcareformon. Sorry to hear about your moms diagnoses. On one hand ADH really is nothing to be worried about but on the other which I am sure the doctor told you and her ADH when found on biopsy they usually suggest a lumpectomy because there is a small percentage that will also cancer hiding along with ADH that was not found on biopsy and thus the reason for taking it all out to make sure there is nothing else there hiding but, it is also your mothers decision and all you can do is give her all the i formation and let her make the decision .

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@jzcareformom

My Mom who is 83 years old was diagnosed with ADH last week after two mammograms and a stereotactic biopsy. Her doctor recommended a follow up excision surgery to remove the tissues surrounding the biopsy site on her left breast. But my Mom doesn’t want to go through the excision. The doctor then recommended a follow up mammogram in 6 months. Considering her age, is my mom making the right decision? She is pretty healthy otherwise, no other health issues. She can handle the Excision surgery easily. How do I convince her to do the excision surgery to rid of ADH tissues or to rule out cancer now?

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Hello jzcareformom – Sorry to hear about your Mom going through this at 83. The common treatment is to biopsy as she has done (Which is actually, I think, more painful and difficult than the excision of the extra tissue….but that was me). Then they follow up to remove the extra surrounding tissue to remove anything suspicious in the immediate area to make sure they got al the potential cancer producing cells.
If they have come to this point in the process they must feel it's a good idea to follow through on the excision surgery but if she hasn't had any issues up to this point it may be that we all get some ADH or ALH by her age.
The second surgery is pretty easy and if she can tolerate it they can see how much there is and whether there is cause for concern. Knowing about it early would be helpful because if it is or has the potential to become cancer the excision would be less invasive than treating breast cancer that has become invasive.
Can you share more of why she doesn't want to do the second surgical excision? And how concerned are her doctors about the potential for her to get invasive breast cancer at this age?
Hugs and good luck.

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@cindylb

Hello jzcareformom – Sorry to hear about your Mom going through this at 83. The common treatment is to biopsy as she has done (Which is actually, I think, more painful and difficult than the excision of the extra tissue….but that was me). Then they follow up to remove the extra surrounding tissue to remove anything suspicious in the immediate area to make sure they got al the potential cancer producing cells.
If they have come to this point in the process they must feel it's a good idea to follow through on the excision surgery but if she hasn't had any issues up to this point it may be that we all get some ADH or ALH by her age.
The second surgery is pretty easy and if she can tolerate it they can see how much there is and whether there is cause for concern. Knowing about it early would be helpful because if it is or has the potential to become cancer the excision would be less invasive than treating breast cancer that has become invasive.
Can you share more of why she doesn't want to do the second surgical excision? And how concerned are her doctors about the potential for her to get invasive breast cancer at this age?
Hugs and good luck.

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Thanks for your reply. My mom hasn’t had a major illness and hasn’t had regular check up for 20 years. We recently convinced her to do a thorough physical checkup, hence the mammograms and biopsy. So we don’t know how long her ADH has been there. She doesn’t like to take medicines. 20 years ago she had a broken rib in a traffic accident, she refused to take any painkillers! That was the last time she had a complete physical examination before recent checkup. She’s stubborn. it’s her decision and we can only hope she change her mind.
Her doctor Didn’t really push her one way or the other, the doctor simply told her the options and reasons behind them. The doctor also told her the risk of ADH becoming cancerous is “not very high”, about 14%. So I think her doctor is rather neutral in his recommendations. I got more concerned from all the googling, not from the doctor’s comments. My mom agreed to the 6-month follow up option and see what the doctor say after a new check up in January.

Liked by cindylb

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@khauff

Hello Jzcareformon. Sorry to hear about your moms diagnoses. On one hand ADH really is nothing to be worried about but on the other which I am sure the doctor told you and her ADH when found on biopsy they usually suggest a lumpectomy because there is a small percentage that will also cancer hiding along with ADH that was not found on biopsy and thus the reason for taking it all out to make sure there is nothing else there hiding but, it is also your mothers decision and all you can do is give her all the i formation and let her make the decision .

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Thanks for your reply. It’s her call and I hope she changes her mind.

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@jzcareformom

Thanks for your reply. My mom hasn’t had a major illness and hasn’t had regular check up for 20 years. We recently convinced her to do a thorough physical checkup, hence the mammograms and biopsy. So we don’t know how long her ADH has been there. She doesn’t like to take medicines. 20 years ago she had a broken rib in a traffic accident, she refused to take any painkillers! That was the last time she had a complete physical examination before recent checkup. She’s stubborn. it’s her decision and we can only hope she change her mind.
Her doctor Didn’t really push her one way or the other, the doctor simply told her the options and reasons behind them. The doctor also told her the risk of ADH becoming cancerous is “not very high”, about 14%. So I think her doctor is rather neutral in his recommendations. I got more concerned from all the googling, not from the doctor’s comments. My mom agreed to the 6-month follow up option and see what the doctor say after a new check up in January.

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jzcareformom – Well, your Mom and I have something in common. I'm not a fan of medicines or doctors either and I rarely use (or can't use) medicines. She sounds tough and pragmatic and that's probably a good thing.
I found the biopsy very uncomfortable so maybe that experience is also leading her to shy away from further treatment? Also, if her risk is low per the doctors, perhaps the 6 month wait will show that her ADH is manageable and maybe has always been there and not giving her additional trouble.
My background is that I had ALH (atypical lobular hyperplasia) vs. ADH (more common ductal). The lobular type is trickier. I had a mammogram which showed a possible problem, I did the biopsy and then had to wait 6 months to remove the area surgically because of insurance issues. It was still a Stage 0 cancer at that point and I was monitored every 6 months. After two years my cancer became invasive lobular breast cancer and I had a bi lateral mastectomy. I am much younger than your Mom however (61 now) and when this all started I was just in my mid 50's…..so I had many years of worrying about the cancer progression. I chose to remove as much possibility of cancer as I could to avoid further drug treatments, etc. But again, I was younger and had a much longer time to consider and see if the cancer went anywhere.
And there's the perplexing part – I could very well have never gotten invasive cancer after that biopsy, but I did. I had equal chances of NOT getting cancer and so does your Mom. Allowing your Mom to wait 6 months with her doctors approval will be ok.
Keep researching and helping your Mom understand the options. The 'average' age for breast cancer is the mid 50's and your Mom's risk is perhaps much lower given her age. Try not to worry too much and try to alleviate your Mom's fears about that second surgery……truly not that bad and if she doesn't need painkillers much (I don't either) then it wouldn't be too bad at all for her to endure (not much fun either) but not nearly as disruptive as one might think.
Hugs

Liked by trixie1313

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@cindylb

jzcareformom – Well, your Mom and I have something in common. I'm not a fan of medicines or doctors either and I rarely use (or can't use) medicines. She sounds tough and pragmatic and that's probably a good thing.
I found the biopsy very uncomfortable so maybe that experience is also leading her to shy away from further treatment? Also, if her risk is low per the doctors, perhaps the 6 month wait will show that her ADH is manageable and maybe has always been there and not giving her additional trouble.
My background is that I had ALH (atypical lobular hyperplasia) vs. ADH (more common ductal). The lobular type is trickier. I had a mammogram which showed a possible problem, I did the biopsy and then had to wait 6 months to remove the area surgically because of insurance issues. It was still a Stage 0 cancer at that point and I was monitored every 6 months. After two years my cancer became invasive lobular breast cancer and I had a bi lateral mastectomy. I am much younger than your Mom however (61 now) and when this all started I was just in my mid 50's…..so I had many years of worrying about the cancer progression. I chose to remove as much possibility of cancer as I could to avoid further drug treatments, etc. But again, I was younger and had a much longer time to consider and see if the cancer went anywhere.
And there's the perplexing part – I could very well have never gotten invasive cancer after that biopsy, but I did. I had equal chances of NOT getting cancer and so does your Mom. Allowing your Mom to wait 6 months with her doctors approval will be ok.
Keep researching and helping your Mom understand the options. The 'average' age for breast cancer is the mid 50's and your Mom's risk is perhaps much lower given her age. Try not to worry too much and try to alleviate your Mom's fears about that second surgery……truly not that bad and if she doesn't need painkillers much (I don't either) then it wouldn't be too bad at all for her to endure (not much fun either) but not nearly as disruptive as one might think.
Hugs

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Thank you so much for the advice.

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@jzcareformom

Thank you so much for the advice.

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The ADH your mom had is estrogen driven. Did the doctors talk to her about taking any medicine to prevent cancer such as arimidex? That is a drug that can lower the risk of breast cancer associated with estrogen driven breast cancers. I was an oncology nurse for 10 years just retiring this past year to take care of myself and family. If she chooses not to do a second surgery again that is her chose but I would definitely encourage regular follow ups every 6 months. That is what I do with alternating mammograms and breast MRIs. It may never turn into anything but if it does the earlier it is found the better. I was 43 (now 45) when my ADH was found. I had a excisional biopsy and was started on arimidex to lower my breast cancer risk. I had to stop the medication due to the side affects. Estrogen hides in fat also so I have decided to get healthy and have lost 55lbs to hopefully lower my risk also and have cut out all processed food. Also don’t believe everything read on the internet. Yes read just don’t believe it all.

Liked by cindylb, trixie1313

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The internet can be helpful but scary. After my diagnosis I was googling everything and all it did was raise my anxiety. I now use Mayo, cancer.org and few other web sites as references so I know what questions to ask dr.; then I can make an informed decisions.

Everyone is unique and treatment or results for one person does not apply to everyone.

Laurie

Liked by cindylb, trixie1313

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@khauff

The ADH your mom had is estrogen driven. Did the doctors talk to her about taking any medicine to prevent cancer such as arimidex? That is a drug that can lower the risk of breast cancer associated with estrogen driven breast cancers. I was an oncology nurse for 10 years just retiring this past year to take care of myself and family. If she chooses not to do a second surgery again that is her chose but I would definitely encourage regular follow ups every 6 months. That is what I do with alternating mammograms and breast MRIs. It may never turn into anything but if it does the earlier it is found the better. I was 43 (now 45) when my ADH was found. I had a excisional biopsy and was started on arimidex to lower my breast cancer risk. I had to stop the medication due to the side affects. Estrogen hides in fat also so I have decided to get healthy and have lost 55lbs to hopefully lower my risk also and have cut out all processed food. Also don’t believe everything read on the internet. Yes read just don’t believe it all.

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I have a 'rule' I established for myself when researching cancer (or any other medical condition) on the internet and all other materials. I read as much as I can from all kinds of sources but I don't believe or take any of it to hear unless I've found it in three reputable sources (Mayo, Cancer.org, Cleveland Clinic, National Institutes of Health, Breast Cancer.org), etc. It's amazing how much you'll learn if you're willing and able to plow through the studies. Then in the end, you can take that information and your questions back to your doctors for clarification. One disclaimer – I have given myself at least one cancer I don't even have doing this, ha ha. But, my oncologist loves to bring it up to me at every visit to rib me a little…….

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@jzcareformom

My Mom who is 83 years old was diagnosed with ADH last week after two mammograms and a stereotactic biopsy. Her doctor recommended a follow up excision surgery to remove the tissues surrounding the biopsy site on her left breast. But my Mom doesn’t want to go through the excision. The doctor then recommended a follow up mammogram in 6 months. Considering her age, is my mom making the right decision? She is pretty healthy otherwise, no other health issues. She can handle the Excision surgery easily. How do I convince her to do the excision surgery to rid of ADH tissues or to rule out cancer now?

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Hi jzcareformom. At 83 I can understand your mom’s concern about having surgery. It is not something to take lightly at any age, but for someone who is up in age I can understand the need for weighing the risk/benefits. It is a surgery with anesthesia and a breathing tube (and a pre-op surgical check-up and all the rest that went w/ it) and for me, at 59, I didn’t particularly find it to be a walk in the park. Her diagnostic mammogram findings should state the size of the microcalcificaitons and when she goes back for her 6 month follow-up (which she should definitely do), then they can do a comparison which might help her to come to a decision on going forward w/ the excisional biopsy. Making these decisions is difficult and lots of people (doctors included) will tell you what you should do – I know from personal experience how debilitating it all can be if you question your own judgement. Good luck to your mom and to you…

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