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.

@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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I am having preventative double masectomy beginning of september.

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I too was just diagnosed with Atypical Ductal Hyperplasia and am not sure what to do with the diagnosis. They are recommending a lumpectomy to remove more tissue, but can't guarantee that they will get all the atypical cells. My sister also has ADH, she is on Estrogen Blocker which makes her feel horrible everyday. The surgeon is saying if I opt not to have the lumpectomy, I should at least take an Estrogen Blocker. I am almost 65, so I am not sure if I should just take a wait and watch approach. Any advice? They say I have a 15 to 20 percent chance of developing breast cancer within 25 years, but I also have 80% chance I won't. What would you guys do?

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@pcarpent

I too was just diagnosed with Atypical Ductal Hyperplasia and am not sure what to do with the diagnosis. They are recommending a lumpectomy to remove more tissue, but can't guarantee that they will get all the atypical cells. My sister also has ADH, she is on Estrogen Blocker which makes her feel horrible everyday. The surgeon is saying if I opt not to have the lumpectomy, I should at least take an Estrogen Blocker. I am almost 65, so I am not sure if I should just take a wait and watch approach. Any advice? They say I have a 15 to 20 percent chance of developing breast cancer within 25 years, but I also have 80% chance I won't. What would you guys do?

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Welcome @pcarpent. Choosing the treatment best for you is tough. Keep in mind that you may not have the same side effects as your sister. If you have the lumpectomy, is further treatment with estrogen blockers also recommended?

I'm tagging fellow member @khauff @cindylb @elsajohnson @zinath123 @doyoga @trixie1313 @elsie37 @jeanadair123 to share their experiences and tips with you.

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Hello Colleen, I was diagnosed with ADH almost 3 years ago. I am also an oncology nurse and my doctor said they do the lumpectomy because if you are diagnosed with ADH with a core needle biopsy there is a slim chance you could have some DCIS hiding. I have also seen a few take the watch and see approach. As for taking the estrogen blockers I did take them for about 2 months but decided that because of the way they made me feel it was better for me not to take them. You need to decide what is better for you. Are you going to have alternating Mammograms and breast MRIs every 6 months?

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Hello,
So I came here searching for some type of support group, feedback or anything to help with the “in between” feeling of ADH/FEA and in the past micro calcifications. I think I found what I was looking for. This forum helps with the feelings of isolation, confusions and loneliness of ADH and the difficult decisions you have to make for a diagnosis that is not cancer. My story:

5 years ago I had a stereotactic biopsy on the right. Showed micro calcifications. Breast specialist recommended Tamixifen x5 years, I refused. At the time I was 47. Mom has had breast cancer 3 times and two of her sisters twice. My genetics are negative.

Fast forward: January 2022 I found a lump in right breast, same area. Biopsy showed fat necrosis – thank goodness right? Well an mri was done bc of my high risk and the results were discordant on the right and requires lumpectomy and on the left biopsy done on a suspicious area and found ADH/FEA which also needs to be excised.
It was recommended that I have the bilateral mastectomy with reconstruction as I am very high risk given family members. Specifically mom and precious micro calcifications and the discordant findings on mri.
I opted for bilateral lumpectomy for now since genetics came back negative. If there ia a malignancy of any kind found after lumpectomies, I will then move forward with mastectomies.
I find it so difficult to make decisions based on this very vague diagnosis. At one point you’re told it could or couldn’t turn to cancer, but at the same time recommending removing your breasts. To me that is incredibly conflicting and has/is creating SO much stress for me.
Any feedback is more than welcomed. I’m having trouble concentrating and living a normal life with minimal stress. My suregery I scheduled for 05/09/22.

Thank you all so much
Char

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@char820

Hello,
So I came here searching for some type of support group, feedback or anything to help with the “in between” feeling of ADH/FEA and in the past micro calcifications. I think I found what I was looking for. This forum helps with the feelings of isolation, confusions and loneliness of ADH and the difficult decisions you have to make for a diagnosis that is not cancer. My story:

5 years ago I had a stereotactic biopsy on the right. Showed micro calcifications. Breast specialist recommended Tamixifen x5 years, I refused. At the time I was 47. Mom has had breast cancer 3 times and two of her sisters twice. My genetics are negative.

Fast forward: January 2022 I found a lump in right breast, same area. Biopsy showed fat necrosis – thank goodness right? Well an mri was done bc of my high risk and the results were discordant on the right and requires lumpectomy and on the left biopsy done on a suspicious area and found ADH/FEA which also needs to be excised.
It was recommended that I have the bilateral mastectomy with reconstruction as I am very high risk given family members. Specifically mom and precious micro calcifications and the discordant findings on mri.
I opted for bilateral lumpectomy for now since genetics came back negative. If there ia a malignancy of any kind found after lumpectomies, I will then move forward with mastectomies.
I find it so difficult to make decisions based on this very vague diagnosis. At one point you’re told it could or couldn’t turn to cancer, but at the same time recommending removing your breasts. To me that is incredibly conflicting and has/is creating SO much stress for me.
Any feedback is more than welcomed. I’m having trouble concentrating and living a normal life with minimal stress. My suregery I scheduled for 05/09/22.

Thank you all so much
Char

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I wanted to also add that taking the estrogen blockers is also a difficult decision. Since I’m opting for the lumpectomies, assuming nothing is found then that is the strong recommendation. Again, all of these very large treatments with a relatively dismissed diagnosis since it is not cancer. Such a difficult place to be in….

REPLY

These are hard decisions. I do want to say that many take estrogen blockers without significant side effects, so perhaps trying them to see how you do might be a good approach.

Also, get as many opinions as you need to feel comfortable with your path.

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@char820

Hello,
So I came here searching for some type of support group, feedback or anything to help with the “in between” feeling of ADH/FEA and in the past micro calcifications. I think I found what I was looking for. This forum helps with the feelings of isolation, confusions and loneliness of ADH and the difficult decisions you have to make for a diagnosis that is not cancer. My story:

5 years ago I had a stereotactic biopsy on the right. Showed micro calcifications. Breast specialist recommended Tamixifen x5 years, I refused. At the time I was 47. Mom has had breast cancer 3 times and two of her sisters twice. My genetics are negative.

Fast forward: January 2022 I found a lump in right breast, same area. Biopsy showed fat necrosis – thank goodness right? Well an mri was done bc of my high risk and the results were discordant on the right and requires lumpectomy and on the left biopsy done on a suspicious area and found ADH/FEA which also needs to be excised.
It was recommended that I have the bilateral mastectomy with reconstruction as I am very high risk given family members. Specifically mom and precious micro calcifications and the discordant findings on mri.
I opted for bilateral lumpectomy for now since genetics came back negative. If there ia a malignancy of any kind found after lumpectomies, I will then move forward with mastectomies.
I find it so difficult to make decisions based on this very vague diagnosis. At one point you’re told it could or couldn’t turn to cancer, but at the same time recommending removing your breasts. To me that is incredibly conflicting and has/is creating SO much stress for me.
Any feedback is more than welcomed. I’m having trouble concentrating and living a normal life with minimal stress. My suregery I scheduled for 05/09/22.

Thank you all so much
Char

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Welcome @char820. I agree. Atypical Ductal Hyperplasia (ADH) and the choices you have to make are confusing and isolating. You're not alone. I'm tagging fellow members like @khauff @pcarpent @jodymattinen @elsajohnson @doyoga @myredss04 @corinneberg and @trixie1313 who have faced similar tough choices as you are now.

I know that it is hard to think of anything else between now and your upcoming surgery. Have confidence is the informed, guided choices you made with your trusted doctors. Now is the time to focus on you and healthy living. And to ask any questions you might have about the upcoming surgery.

What would help you prepare and to know what to expect? What activities do you do to take your mind of things for a brief respite?

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@char820

I wanted to also add that taking the estrogen blockers is also a difficult decision. Since I’m opting for the lumpectomies, assuming nothing is found then that is the strong recommendation. Again, all of these very large treatments with a relatively dismissed diagnosis since it is not cancer. Such a difficult place to be in….

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First let me say I am sorry for what you are having to deal with. These are very difficult decisions to make no matter how much information you have. But, get a second, third even fourth opinion if it will help you make the decisions. You have to do what is best for you.

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@char820

Hello,
So I came here searching for some type of support group, feedback or anything to help with the “in between” feeling of ADH/FEA and in the past micro calcifications. I think I found what I was looking for. This forum helps with the feelings of isolation, confusions and loneliness of ADH and the difficult decisions you have to make for a diagnosis that is not cancer. My story:

5 years ago I had a stereotactic biopsy on the right. Showed micro calcifications. Breast specialist recommended Tamixifen x5 years, I refused. At the time I was 47. Mom has had breast cancer 3 times and two of her sisters twice. My genetics are negative.

Fast forward: January 2022 I found a lump in right breast, same area. Biopsy showed fat necrosis – thank goodness right? Well an mri was done bc of my high risk and the results were discordant on the right and requires lumpectomy and on the left biopsy done on a suspicious area and found ADH/FEA which also needs to be excised.
It was recommended that I have the bilateral mastectomy with reconstruction as I am very high risk given family members. Specifically mom and precious micro calcifications and the discordant findings on mri.
I opted for bilateral lumpectomy for now since genetics came back negative. If there ia a malignancy of any kind found after lumpectomies, I will then move forward with mastectomies.
I find it so difficult to make decisions based on this very vague diagnosis. At one point you’re told it could or couldn’t turn to cancer, but at the same time recommending removing your breasts. To me that is incredibly conflicting and has/is creating SO much stress for me.
Any feedback is more than welcomed. I’m having trouble concentrating and living a normal life with minimal stress. My suregery I scheduled for 05/09/22.

Thank you all so much
Char

Jump to this post

Hi Char, I have not been exactly where you are but a close situation at the beginning of my journey. Like you I was having a hard time concentrating and taking care of business when my mind was in a loop of worry and decision making. This is a very difficult thing.
I have learned to give myself time to worry once or twice a day for 30 minutes, then if I start obsessing at a different time, I can say nope, I will think about this during its time, this time is for something else.
I also would applaud you for what seems like a very rational and well thought out decision of going with lumpectomies then if cancer is found move ahead with mastectomies.
I hope you can likewise think about endocrine therapy in this way. Keep an open mind and get as informed as possible about why exactly the doctors are recommending it for you. Because you are younger than most of the people who have to make these decisions, you have more to consider about quality of life. You also have more years to live with the decisions you make or revise them as necessary. I am quite close to your age, just a youngster.
Do you have a list of questions for your doctor, about surgery? How about in reference to endocrine therapy?

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