Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

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!!

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.

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!!

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.

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.

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!!

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!!