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 group.

@cindylb

sushilady1 – I am glad you were able to make the decision that was best for you and that you are content with it. I didn't get any resistance to my bi lateral mastectomy as my cancer was in my left at Stage 0 and the right at Stage 1…..I don't miss my breasts either and I reduced my risks as much as possible and I am glad not to have quite as much on going worry.

There is a funny saying on t shirts which says, 'Yes, these are fake, my old ones were trying to kill me"……kind of sums it up!

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T-shirt saying tells it like it is❤️

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@ckf1317

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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Hi! Just saw your post and my situation is very similar. I am scheduled for a mastectomy in April. Did you decide on the same?

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@confused76

I’m struggling with my ADH diagnosis that I literally got Xmas eve…found out that I needed an ultrasound done a couple of days before Thanksgiving then had it done the day before I was cooking for a slough of people at my house. Biopsy done 2 WEEKS prior to Xmas Eve BUT I’m lucky like that and got them Xmas eve morning!! This was my 3rd mammogram ever since I will be 43 in a couple months..I have ADH and a PASH. In the last year I have had 3 “precancerous” spots removed from a dermatologist and according to the oncologist I have started seeing melanoma and breast cancer go hand in hand. I want a double mastectomy and my mind is firm on that BUT my oncologist and a ridiculously annoying second opinion one want me to do the “chemo pill”-their words not mine- for 5 years of course with tons of side effects that I without a doubt will get!! Had genetic testing done because there is background in that department but it was negative…the unfortunate part of that is that they don’t know what is causing these cancerous cells-again their words not mine! I go this Friday to have the marker placed in the area and then on the 8th to remove the ADH…he will NOT take margins which I don’t understand and I feel as if these particular doctors aren’t doing their job! Said my insurance won’t pay for a double mastectomy and after the 8th I will go to the “cancer prevention center” where a plan will be created for me…chemo pill…I said as much to him and he said “plenty of women take it”. I’m a mom of 2 and 42 who has made my mind up and want a double mastectomy and it boils down to money and I despise these doctors…however, I’m extremely angry at how these last couple of months have played out regardless of the incompetence!!

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I am same timeline and same diagnosis. I am scheduled for surgery. I would continue looking until you find a surgeon that will respect your decision. I’m sorry you have to go through this too.

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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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@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!

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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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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?

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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.

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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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