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.

@elsie37

As someone diagnosed with ADH, ALH, LCIS in both breasts from 4 biopsies at ages 58-59, I have spent a lot of time researching and have gotten numerous opinions from both oncologists and surgeons, including at Mayo*. The various online breast cancer sites I am on are filled with women who have opted for prophylactic mastectomies for these atypia conditions and the overwhelming consensus seems to be they are happy with their decisions. All the doctors I have talked to (with the exception of one oncologist who said she would not persuade me in any direction) say NO to prophylactic bi-lateral mastectomy.

I wonder what these doctors would say to one of the women they have counseled against breast removal after she has gotten an advanced stage of cancer. I always ask surgeons, radiologists, oncologists, NPs in breast care, etc. if they encounter late stage breast cancer, metastasized cancer or deaths from women who started with atypia and kept their breasts but eventually proceeded down the road, perhaps many years later, to something really bad. The answer they always give me is no, they don't see that.

But it seems there is a disconnect between women with this disease who want to remove the problem and the medical staff who seem to be more open to the risks. In fact the recent trends are less and less intervention, whether lower doses of drugs or less surgery.

Just wondering how the rest of you out there–pros and laypeople–might respond. Thank you.

*Very impressed with ALL aspects of my first visit to Mayo. What a place!!

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elsie37 – This is a very interesting question and I hope we'll all get to see some feedback on this question.
Looking back removing my breasts at Stage 0 (LCIS) would have been a good decision but I was monitored for 2 years and ended up with bi lateral mastectomy at Stage 1. Although I caught it early (good news), if "I knew then what I know now"……I would have opted for the mastectomy before my cancer became invasive.
I think the medical thought is that you may NOT get invasive cancer at all and then a doctor has put a patient at risk with an unnecessary surgery and the possible complications. BUT, I absolutely think women should have the option of having the mastectomies at any point in their treatment if they choose to do so.
It was telling to me that the physical therapist treating me for post mastectomy lymphedema shared that she had her breasts removed and had reconstruction at age 40 when diagnosed with DCIS because………..she had seen so many patients with lymphedema and cancer that had spread to their lymph nodes that she didn't want to put herself at that risk. This was a medical doctor who opted to remove her risk so she wouldn't have to go through what she was seeing her patients suffering. I think that is telling.
Another question I always ask oncologists is whether or not they have ever used chemotherapy or radiation on themselves even though they don't have cancer or whether they would use chemo and radiation if they got cancer. All of them, of course, say no they have never and would never use a drug on themselves if they didn't have the disease (which is of course the 'right' answer) but I'm often put off a little as they recommend treatments which can have devastating side effects and at the very least very troublesome side effects and say it's not that bad………when they've never actually experienced anything close to the experience they are putting their patients through. (I have had this conversation with the several oncologists I'm working with for my cancer, my husband's and in the past my sister and step father, it is not received positively …no surprise). I just think doctors need to remember that for each person diagnosed with cancer it a difficult diagnoses and that as doctors they have had to shield themselves from getting too personally involved in each patient but that can also mean they don't really hear their patients or understand that each one is unique in their ability to handle risk and make these very tough decisions. Since there is little chance we will change how doctors behave, as patients we must educate ourselves, reach out to others for feedback and have the right to make whatever decisions we feel are best suited to our ability to best manage our disease, our lives and our health.
I'd love to see any feedback from surgeons and oncologists on this issue.

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@cindylb

elsie37 – This is a very interesting question and I hope we'll all get to see some feedback on this question.
Looking back removing my breasts at Stage 0 (LCIS) would have been a good decision but I was monitored for 2 years and ended up with bi lateral mastectomy at Stage 1. Although I caught it early (good news), if "I knew then what I know now"……I would have opted for the mastectomy before my cancer became invasive.
I think the medical thought is that you may NOT get invasive cancer at all and then a doctor has put a patient at risk with an unnecessary surgery and the possible complications. BUT, I absolutely think women should have the option of having the mastectomies at any point in their treatment if they choose to do so.
It was telling to me that the physical therapist treating me for post mastectomy lymphedema shared that she had her breasts removed and had reconstruction at age 40 when diagnosed with DCIS because………..she had seen so many patients with lymphedema and cancer that had spread to their lymph nodes that she didn't want to put herself at that risk. This was a medical doctor who opted to remove her risk so she wouldn't have to go through what she was seeing her patients suffering. I think that is telling.
Another question I always ask oncologists is whether or not they have ever used chemotherapy or radiation on themselves even though they don't have cancer or whether they would use chemo and radiation if they got cancer. All of them, of course, say no they have never and would never use a drug on themselves if they didn't have the disease (which is of course the 'right' answer) but I'm often put off a little as they recommend treatments which can have devastating side effects and at the very least very troublesome side effects and say it's not that bad………when they've never actually experienced anything close to the experience they are putting their patients through. (I have had this conversation with the several oncologists I'm working with for my cancer, my husband's and in the past my sister and step father, it is not received positively …no surprise). I just think doctors need to remember that for each person diagnosed with cancer it a difficult diagnoses and that as doctors they have had to shield themselves from getting too personally involved in each patient but that can also mean they don't really hear their patients or understand that each one is unique in their ability to handle risk and make these very tough decisions. Since there is little chance we will change how doctors behave, as patients we must educate ourselves, reach out to others for feedback and have the right to make whatever decisions we feel are best suited to our ability to best manage our disease, our lives and our health.
I'd love to see any feedback from surgeons and oncologists on this issue.

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That tidbit from the PT is most intriguing and an angle I have not seen before. Thank you Cindylb for sharing your personal story and insights. They will benefit many. So glad your cancer was caught early.

Liked by cindylb

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@elsie37

As someone diagnosed with ADH, ALH, LCIS in both breasts from 4 biopsies at ages 58-59, I have spent a lot of time researching and have gotten numerous opinions from both oncologists and surgeons, including at Mayo*. The various online breast cancer sites I am on are filled with women who have opted for prophylactic mastectomies for these atypia conditions and the overwhelming consensus seems to be they are happy with their decisions. All the doctors I have talked to (with the exception of one oncologist who said she would not persuade me in any direction) say NO to prophylactic bi-lateral mastectomy.

I wonder what these doctors would say to one of the women they have counseled against breast removal after she has gotten an advanced stage of cancer. I always ask surgeons, radiologists, oncologists, NPs in breast care, etc. if they encounter late stage breast cancer, metastasized cancer or deaths from women who started with atypia and kept their breasts but eventually proceeded down the road, perhaps many years later, to something really bad. The answer they always give me is no, they don't see that.

But it seems there is a disconnect between women with this disease who want to remove the problem and the medical staff who seem to be more open to the risks. In fact the recent trends are less and less intervention, whether lower doses of drugs or less surgery.

Just wondering how the rest of you out there–pros and laypeople–might respond. Thank you.

*Very impressed with ALL aspects of my first visit to Mayo. What a place!!

Jump to this post

I completely agree with you that the medical staff are trying to use the least intervention as possible. At 37 I was diagnosed with her+ and a month later after the MRI and bone scan I was told I was stage 4. My oncological surgeon only wanted to do a lumpectomy after ACT. It was mental anguish to wait 8 months for surgery. I knew I could not deal with the constant monitoring and begged her for a DMX. It was a fierce negotiation but she agree to only do one breast and leave the other. Luckily, my plastic surgeon agreed and talked the oncological surgeon into doing both. I do not miss my breast and am very happy with my decision.

Liked by cindylb

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@sushilady1

I completely agree with you that the medical staff are trying to use the least intervention as possible. At 37 I was diagnosed with her+ and a month later after the MRI and bone scan I was told I was stage 4. My oncological surgeon only wanted to do a lumpectomy after ACT. It was mental anguish to wait 8 months for surgery. I knew I could not deal with the constant monitoring and begged her for a DMX. It was a fierce negotiation but she agree to only do one breast and leave the other. Luckily, my plastic surgeon agreed and talked the oncological surgeon into doing both. I do not miss my breast and am very happy with my decision.

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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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@sushilady1

I completely agree with you that the medical staff are trying to use the least intervention as possible. At 37 I was diagnosed with her+ and a month later after the MRI and bone scan I was told I was stage 4. My oncological surgeon only wanted to do a lumpectomy after ACT. It was mental anguish to wait 8 months for surgery. I knew I could not deal with the constant monitoring and begged her for a DMX. It was a fierce negotiation but she agree to only do one breast and leave the other. Luckily, my plastic surgeon agreed and talked the oncological surgeon into doing both. I do not miss my breast and am very happy with my decision.

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Sushilady, thanks for sharing your experience and glad you were able to get the procedure you wanted. Good health to you going forward!

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Need info re: invasive ductal cancinoma

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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!!

Liked by cindylb, elsie37, cmd03

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I am so sorry for what you are having to deal with. I had your same diagnoses. I found the lump right before Christmas of 2016. U/S did not show anything but breast MRI in Feb. of 2017 showed the spot. I had a biopsy done and was diagnosed with ADH. I had a lumpectomy to take out the ADH and all was clear. I am prone to cysts / tumors and don't know why. I had to have a hysterectomy in May of the previous year due to having 3 large fibroids and then after the breast issue ended up having my ovaries out due to large cysts on them and now they have found a pericardial cyst. I am high risk breast cancer and was even before they ADH diagnoses. I tried taking the Arimidex pill for prevention but stopped it due to the side affects and I don't think I am going to try another one either. I go for breast MRI/s / mammograms alternating every 6 months. Some doctors will take your breasts if you ask due to the diagnoses if you are high risk and some won't. I don't know why some will and some won't. I don't want to get rid of mine so I will continue with follow-ups every 6 months. But if this is something you really want maybe go get a second opinion with a different doctor and see if they will. I am also only 45 years old. My husbands side all have the BRCA1 gene I have not been tested so I don't know if I do or not but either way my kids are at extremely high risk. We have not tested the kids because if we do they can be denied from getting life insurance if they test positive and we don't want to take that away from them should they every want to get that when they get older. We are just assuming they are positive and taking precautions as are their doctors.

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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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Hugs to you confused76………….You are facing the really hard decisions right now. It sounds like you might want to get a second opinion from another group of doctors. When my husband was diagnosed with terminal cancer (of an unknown source) the doctor we had handled things very poorly. We requested a second opinion and our first group of doctors paid for that meeting (amazingly)….you may not be able to get that 'deal' but your health is too important not to find a doctor and practice group that you trust and to whom you can relate.
Also, you should go ahead with any biopsy and surgery to remove the ADH. Make sure your feelings are known about getting clean margins and request the results of your pathology in writing (I keep all of my records myself and I've learned to read them).
I don't know about melanoma and breast cancer but it does seem to be true that if your body will make cancer of one type it may want to make other cancers as well.
Keep us posted and be assured that by being an active participant in your cancer you can find a doctor who will listen and honor your questions and decisions.

Liked by elsie37

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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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Terrible and uncaring response, "plenty of women take it." But plenty cannot. Still, why don't you give the meds a try? If they are not for you and the side effects are not tolerable, then absolutely quit. Giving the drugs a try means you know you have explored all the options. They called ADH cancerous cells? Again, terrible and inaccurate! You may get better advice at the "cancer prevention" center. Please share after the 8th, if you wish. One piece of advice I'll share is from a Nurse Practicioner at one of those "cancer prevention" centers who advised waiting a year after an atypia diagnosis (like yours) to see how increased surveillance goes for you over a year's time and to see how you feel about it. Your diagnosis does not require immediate action and it is likely you will have a different perspective after a year–not necessarily a change in your decision, but you'll have a year to digest this upsetting news, do some research, talk to some experts, etc. That will provide a different perspective. Best of luck to you, @confused76. Indeed it is a confusing time when newly diagnosed with ADH.

Liked by cindylb, ckf1317

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I had ADH in 1982 my doctor did not hesitate removing the mass since apparently it is a known fact that this can turn into cancer. At that time I had no idea about this and looking back I am glad my doctor did the surgery.
I have since had breast cancer in 2016.

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@elsie37

Terrible and uncaring response, "plenty of women take it." But plenty cannot. Still, why don't you give the meds a try? If they are not for you and the side effects are not tolerable, then absolutely quit. Giving the drugs a try means you know you have explored all the options. They called ADH cancerous cells? Again, terrible and inaccurate! You may get better advice at the "cancer prevention" center. Please share after the 8th, if you wish. One piece of advice I'll share is from a Nurse Practicioner at one of those "cancer prevention" centers who advised waiting a year after an atypia diagnosis (like yours) to see how increased surveillance goes for you over a year's time and to see how you feel about it. Your diagnosis does not require immediate action and it is likely you will have a different perspective after a year–not necessarily a change in your decision, but you'll have a year to digest this upsetting news, do some research, talk to some experts, etc. That will provide a different perspective. Best of luck to you, @confused76. Indeed it is a confusing time when newly diagnosed with ADH.

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My understanding is that ADH or ALH is not technically 'cancer' but pre cancer. It may become an invasive cancer or may not. That's the challenge we face as patients and that doctors face. Removing them in a lumpectomy surgery would eliminate those cells that could potentially become cancer.

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@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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