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.

@cindylb

monical……….We're all glad you found this forum as well. It's been a great source of support for me. I had a pretty 'traditional' treatment plan……stereotactic biopsy, excisional biopsy – ALH (lobular vs. ductal) on my left breast. That was 5 years ago. 3 years ago (following testing each 6 months I found a lump, which was a cyst. The doctors sort of wrote that off but I'm glad I insisted on an ultrasound which found a suspected cancer, which in fact was invasive cancer, Stage 1. )
I found the process of the two biopsies and MRI's to be a lot more painful and anxiety producing in many ways that the bi lateral mastectomy I chose. (My issue was Lobular Hyperplasia in the left breast and lumpectomy ultimately and the invasive cancer in the right breast…..so off with my breasts. I am holding at 3 years and counting now with no new signs of cancer.)
As you move along this journey there will be tests and most of them have some level of fear and possible 'issues'. I didn't like the MRI and the contrast dye made me feel very odd (during the test) but it's very sensitive and picks up lots of smaller things that might be missed otherwise. Just something to possibly consider. I will have a follow up MRI possibly this year or next just to make sure I too worry about the effect of the dyes and possible complications but sometimes they can detect something early and that's a big plus.
Hugs……….people here have very diverse and helpful experiences. Keep posting and people will be there for you.

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@cindylb, thank you for your response and for sharing your experience. I'm not sure what I will do regarding the MRI…the outcome of this biospy will most likely help me to decide. I feel like I have been sucked into a medical vortex and each decision carries so much weight…

Liked by cindylb

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@doyoga

@monical …. FB support groups I’ve found helpful xxx

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@doyoga, thank you for all of the support groups that you posted.

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@monical

@doyoga, thank you for all of the support groups that you posted.

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@monical you’re welcome love. Xxxx my best to you too.

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Here are some relevant videos related to this discussion about atypical breast lesions and prophylactic mastectomy – I hope.

Dr. Amy Degnim – Atypical breast lesions and benign breast disease

Dr. Tina Hieken – Bilateral prophylactic mastectomy

Dr. Jennifer Racz – What to expect following bilateral prophylactic mastectomy surgery

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@monical

@cindylb, thank you for your response and for sharing your experience. I'm not sure what I will do regarding the MRI…the outcome of this biospy will most likely help me to decide. I feel like I have been sucked into a medical vortex and each decision carries so much weight…

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It is very overwhelming at first….it really is. And each decision is important but it will get easier as you get more familiar and comfortable with the process, the tests and the options. Your doctors will make recommendations but unfortunately only you can make those final decisions. Hopefully you have family or friends to bounce the decisions off of as well and of course, we're all here for you too. You'll find lots of experiences here and will find that many women make various decisions throughout the process you very aptly named the medical vortex. Hugs and best wishes for good news for you.

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@camper1968

HI
I had my first mammogram 1/2/19. They found a spot and wanted to do a ultrasound, after the ultrasound they decided that I needed a core biopsy. Had that done 1/15/19. The results came back with Atypical ductal Hyperplasia (ADH). Now they want to do a surgical biopsy to check the surrounding area and remove ADH cells. I think I am understanding this all correctly. February 6 is the surgical biopsy. I haven't told my family, other than my husband. My cousin died last year with triple negative and my family will be so devastated if this is cancer. The waiting is the worst.

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@camper1968 I am wondering how you are doing after your surgical biospy? I am having mine in 4 days and am wondering how your healing is going. xx

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@cindylb

It is very overwhelming at first….it really is. And each decision is important but it will get easier as you get more familiar and comfortable with the process, the tests and the options. Your doctors will make recommendations but unfortunately only you can make those final decisions. Hopefully you have family or friends to bounce the decisions off of as well and of course, we're all here for you too. You'll find lots of experiences here and will find that many women make various decisions throughout the process you very aptly named the medical vortex. Hugs and best wishes for good news for you.

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@cindylb I do have a good support of family and also my co-workers too. Yesterday was a difficult day…having all the signs of an anxiety attack, but today is better as my son, dil, and grandbabies decided to spend the weekend and keep me busy. I am not looking forward to the surgery, but mostly a bit scared over the anethesia. Just taking each day as it comes the best that I know how.

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@colleenyoung

Here are some relevant videos related to this discussion about atypical breast lesions and prophylactic mastectomy – I hope.

Dr. Amy Degnim – Atypical breast lesions and benign breast disease

Dr. Tina Hieken – Bilateral prophylactic mastectomy

Dr. Jennifer Racz – What to expect following bilateral prophylactic mastectomy surgery

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@colleenyoung Thank you for posting those videos…very informative.

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@monical

@cindylb I do have a good support of family and also my co-workers too. Yesterday was a difficult day…having all the signs of an anxiety attack, but today is better as my son, dil, and grandbabies decided to spend the weekend and keep me busy. I am not looking forward to the surgery, but mostly a bit scared over the anethesia. Just taking each day as it comes the best that I know how.

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I was scared about the anesthesia too……….I can relate. But here I am and you'll be AOK too……..Big hugs. Keep us all posted and keep reaching out. We've all been there. They are quite good at breast cancer surgery now. As my surgeon said, 'just be glad it's your breasts and not your insides'……those are much harder to be 'good' at getting whittled on, or so she thought (my breast surgeon was a general surgeon so she did multiple types of surgeries).

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@cindylb

I was scared about the anesthesia too……….I can relate. But here I am and you'll be AOK too……..Big hugs. Keep us all posted and keep reaching out. We've all been there. They are quite good at breast cancer surgery now. As my surgeon said, 'just be glad it's your breasts and not your insides'……those are much harder to be 'good' at getting whittled on, or so she thought (my breast surgeon was a general surgeon so she did multiple types of surgeries).

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@cindylb Thanks so much…marker goes in tomorrow at 8:30 and surgery at noon. Thanks for the hugs – I really need them! I'll keep you posted…

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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!!

Liked by amy11559

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@monical

@cindylb Thanks so much…marker goes in tomorrow at 8:30 and surgery at noon. Thanks for the hugs – I really need them! I'll keep you posted…

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Just thinking about you. I know it's way too early to hear from you but I'm hoping everything has gone well…….

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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!!

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@elsie37
As a 52 yo woman with ductal and lobular atypia, schedule for DMX next week, I have to draw upon my background as a Financial analyst, and behavioural analysis , to make sense of that disconnect. It’s all about the risk analysis. And human tendency.
Study after study shows we humans are LOSS averse. Not risk averse. In fact we will take on additional risk in order to not ‘lose’. (Eg – someone at Vegas, already ‘down’, will DOUBLE DOWN (thereby taking on MORE risk ) in the HOPES of not ending up LOSING. )
We woman do NOT want to lose our lives. So we’ll take in the risks of surgeries to avoid that loss. The Drs? It’s not THEIR life they are pondering the potential loss of, so they completely objectively simply look at numbers and statistics.

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@doyoga

@elsie37
As a 52 yo woman with ductal and lobular atypia, schedule for DMX next week, I have to draw upon my background as a Financial analyst, and behavioural analysis , to make sense of that disconnect. It’s all about the risk analysis. And human tendency.
Study after study shows we humans are LOSS averse. Not risk averse. In fact we will take on additional risk in order to not ‘lose’. (Eg – someone at Vegas, already ‘down’, will DOUBLE DOWN (thereby taking on MORE risk ) in the HOPES of not ending up LOSING. )
We woman do NOT want to lose our lives. So we’ll take in the risks of surgeries to avoid that loss. The Drs? It’s not THEIR life they are pondering the potential loss of, so they completely objectively simply look at numbers and statistics.

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Doyoga, your background provides a unique perspective in more than one respect. I wish you much luck in your operation. Thank you for responding.

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@monical

@cindylb Thanks so much…marker goes in tomorrow at 8:30 and surgery at noon. Thanks for the hugs – I really need them! I'll keep you posted…

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If I am counting the days right, Monical, your surgery is over! Hope your recovery goes great.

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