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.

@colleenyoung

Hi @bsones, welcome to Connect. You'll notice that I moved your message to this discussion group about Atypical Ductal Hyperplasia so you can connect with others talking about ADH, like @elsajohnson @icya2282 @cindylb @jrawls99 @khauff and others. If you click VIEW & REPLY you can read through past posts. You are not alone. The waiting and not know is really hard.

You are dealing with so many different things. I simply can't imagine. Let's start by getting you connected with others who have ADH.

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@colleenyoung … I’m about to have DMX for ADH and ALH ….. would love to connect to that discussion also. I dont See any ‘VIEW AND REPLY’ button. Just a REPLY…..???

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@bsones, so sorry to hear that you are dealing with ADH. Yes, the waiting is the hardest. Let me share with you my journey, I am hoping that will give you some comfort. My journey started at the end of May last year when I went in and did my annual screening mammogram. I was so busy at that time that I almost didn't do it, but somehow, there was this little voice in my head that kept bugging me to get it done. I had my screening mammogram on 5/30, and was called by my PCP the next day to let me know that the radiologist saw something on both sides that she wanted me to go back and do a diagnostic mammogram. I did that a week later. After the tech completed the diagnostic mammogram, she asked me to wait while she spoke with the radiologist to make sure she got all of the images needed. A few minutes later, the tech said the radiologist wanted to speak with me. I knew then that something was not right. This really came as a big surprise to me since I have been doing screening mammogram since I was 40, and have had normal results for the past 11 years. I did not feel any lumps or pain in my breast, I had no discharge, no inverted nipple, etc. As a matter of fact, my PCP just did an annual exam on me a couple of weeks earlier and didn't find anything. I am overall very healthy and in general, eat well. Never in my wildest imagination did breast cancer come into my radar screen.

The radiologist told me that I had microcalcifications on the left side and 2 masses on the right that are suspicious, and that she needed me to do a biopsy on both sides (stereotactic biopsy on the left and ultrasound guided biopsy on the right). The biopsy results showed I have ADH on the left and 2 fibroadenoma on the right. I first went to see a breast surgeon who suggested surgery/lumpectomy for the left. He didn't say anything about my right side. I then went to the breast clinic at Mayo to get a 2nd opinion. The breast surgeon at Mayo gave me options to do a lumpectomy for the left or just wait and monitor the ADH if I wanted to. She also referred me to see an oncologist at Mayo. I decided to have a lumpectomy done at the end of August. Thankfully, there was nothing other than ADH after the pathology report came back. I am on a 6-month monitor schedule currently and am due for my next (the first after the surgery) in March. The surgery was really not that bad. My left breast felt a little swollen the day after, but the pain was very manageable and was really almost nothing by the 3rd day or so. The area where the lumpectomy occurred felt hard in the beginning, but it is now almost back to normal. You can see the incision line but not that awful-looking. Overall, my surgery went very well and was really no big deal.

I then saw an oncologist in September who prescribed tamoxifen to reduce future breast cancer risk. I had some trouble sleeping and with hot flashes in the first few months since I started taking it in Oct last year, but I am now getting to used to it and the side-effects are minimal. My oncologist also referred me to a dietitian and a genetic counselor. My genetic testing came back with no breast cancer genes. I believe I have taken all of the precaution steps that one can take for ADH. I am now on a monitor schedule and will have to see how it goes.

Please feel free to ask questions. I know the feeling when I first found out about ADH and had no place to turn. This forum has been wonderful. I am happy to answer any questions you may have.

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@doyoga

@colleenyoung … I’m about to have DMX for ADH and ALH ….. would love to connect to that discussion also. I dont See any ‘VIEW AND REPLY’ button. Just a REPLY…..???

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Sorry you are dealing with both ADH and ALH. I was diagnosed with ADH in Feb of 2017. I have been doing mammograms and Breast MRI ulternating every 6 months for the last 5 years. I am 45, I have been doing Mammograms yearly before that since I was 30. I am high risk breast cancer as I have 3 relatives that have had it and I have extremely dense breast tissue and have gone through fertility. Anyway, even though I do checks every 6 months I found the lump myself in Dec of 2016 right before Christmas. I called my breast doctor and went in for an ultrasound. The Doctor could also feel the lump but nothing showed up on ultrasound. I was due for my breast MRI in Feb. so I was told we would wait for that unless I noticed the lump getting bigger. In Feb I had the MRI which showed the spot. Had a biopsy via-MRI which showed ADH and radial scar. I was referred to a breast surgeon and a lumpectomy was recommend as with ADH there can be cancer hiding with it. so I had the Lumpectomy on Feb 19. 2017 and everything came back clear. I did end up Mondors disease after the lumpectomy which was not fun, and because I also have had a completely hysterectomy with my ovaries out due to cysts and tumors on them also. I could not do tamoxifen. I was started on Arimadex to help lower my estrogen even more since ADH is driven by estrogen but I had so many awful side affects from it that I was only on it for a month and had to stop. My husband has the BRCA1 gene so I worry about my kids with that on his side and now me having this really puts my kids at risk. My daughter was told she should start getting mammograms at age 25 (she is 19 now and my oldest). Good luck to..

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@doyoga

@colleenyoung … I’m about to have DMX for ADH and ALH ….. would love to connect to that discussion also. I dont See any ‘VIEW AND REPLY’ button. Just a REPLY…..???

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Doyoga, you are following the ADH discussion. Here's the link to read all the messages posted so far:
https://connect.mayoclinic.org/discussion/anyone-dealing-with-atypical-ductal-hyperplasia-adh/
Simple click REPLY to add your message.

REPLY

Hello everyone – I just found this forum and I am so glad that I did. After a stereotactic biospy in January revealed that I have ADH my head has been spinning. I am having my excisional biospy a week from tomorrow (Saviscout marker going in morning of surgery) and I am trying very hard to keep my anxiety in check. My genetic testing is negative, but I'm at high risk because of family history of breast cancer. I already consulted with a medical oncologist to discuss my options and prophylactic medication was addressed. I was instructed to get an MRI and I brought up my concerns w/ the contrast and was told it wasn't a big deal if I didn't have kidney disease, so yesterday I was at the hospital to get the MRI and at the last minute I was given a sheet about the contrast, Gadavist, that made me walk out of the door. It really upset me that I had to find out the potential side effects and that this contrast can linger in your body for months or years at the last minute. So I've decided to deal with the surgery first, get the results, and then have a clearer picture of the risks/benefits of the MRI. Just taking one step at a time…Thanks for "listening" …

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It turned out on my first lumpectomy that the lesion was both infiltrating breast cancer that moved through to 2 sentinel nodes and then eroded beyond 1 node AND another little section with atypical ductal hyperplasia. At second lumpectomy (following seeing yet another lesion in same breast), it was noted as infiltrating breast cancer and, guess what, there was yet another lesion not noted on any scan/MRI of ADH. ADH can be a precursor of cancer so better safe than sorry. At second lumpectomy, surgeon & plastic surgeon did a reduction of both breasts and the other breast showed no ADH or cancer.

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@monical

Hello everyone – I just found this forum and I am so glad that I did. After a stereotactic biospy in January revealed that I have ADH my head has been spinning. I am having my excisional biospy a week from tomorrow (Saviscout marker going in morning of surgery) and I am trying very hard to keep my anxiety in check. My genetic testing is negative, but I'm at high risk because of family history of breast cancer. I already consulted with a medical oncologist to discuss my options and prophylactic medication was addressed. I was instructed to get an MRI and I brought up my concerns w/ the contrast and was told it wasn't a big deal if I didn't have kidney disease, so yesterday I was at the hospital to get the MRI and at the last minute I was given a sheet about the contrast, Gadavist, that made me walk out of the door. It really upset me that I had to find out the potential side effects and that this contrast can linger in your body for months or years at the last minute. So I've decided to deal with the surgery first, get the results, and then have a clearer picture of the risks/benefits of the MRI. Just taking one step at a time…Thanks for "listening" …

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Walked this path just this past December. Stereotactic failed to get the calcifications seen on Mammogram. ADH found incidentally in the ‘missed’ biopsies. Had savi scout and lumpectomy Jan 3rd. Calcifications benign but more ADH AND ADL.
diffuse enough to put my risk of development into cancer at 49%. I too am negative for BRCA. Have only a paternal aunt who died at 32.
I’ve elected to have prophylactic bilateral mastectomy, including nipple removal. Above pectoral round implants. (I’m v athletic – need my muscles more than my breasts). With Aloderm (cadaver donated skin complex to buffer between my skin and the implant. I’m thin – no fat layer to either graft from, or cushion the implant). Non textured (aka smooth) implants as I don’t wish to take on the possible additional risk of contracting lymphoma (seemingly associated with textured implants). I would’ve preferred teardrop shaped implants(I think) but they’d have to have been textured in order to stay in place. And (see above on textured) Surgery set for March.

Lots of researching. Interviewing multiple surgeons. Introspection.
It’s the right choice for me.
And rest assured you’ll find the right one for u too.
There are a number of FB closed groups that offer terrific support too. Lmk if you’d care fir the names.
Hugs. Keep breathing.

Liked by monical

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

127D2E25-2611-41C2-9664-4B1641CD4672

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I’ve chosen NOT to do nipple delay (saving) surgery and instead have them removed too. Why? Excuse all cancer risk. And. Why have an extra surgery??worry about necrosis, scar tissue, asymmetrical positioning or nipple falling below center of the implant etc? Added bonus ? No more padded bras to conceal nipples beneath certain tops. I’ll do tattooing eventually – which I find feminine, sensual and too empowering and powerful.
I chose NOT to simply monitor – I wish To live. Out loud. And not worry. And not take Rx meds and have to have MRIs every 6 months. And all that stress. My personal choice is to take these measures now. Vs 49/51 chance of doing it anyway AND having to fight cancer too.
Please understand this is all merely my 2cents worth. You’ll find YOUR path. My v best of wishes darling xxx

1027F5DC-7C71-40D1-9CD9-8BC075009A6D

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@monical

Hello everyone – I just found this forum and I am so glad that I did. After a stereotactic biospy in January revealed that I have ADH my head has been spinning. I am having my excisional biospy a week from tomorrow (Saviscout marker going in morning of surgery) and I am trying very hard to keep my anxiety in check. My genetic testing is negative, but I'm at high risk because of family history of breast cancer. I already consulted with a medical oncologist to discuss my options and prophylactic medication was addressed. I was instructed to get an MRI and I brought up my concerns w/ the contrast and was told it wasn't a big deal if I didn't have kidney disease, so yesterday I was at the hospital to get the MRI and at the last minute I was given a sheet about the contrast, Gadavist, that made me walk out of the door. It really upset me that I had to find out the potential side effects and that this contrast can linger in your body for months or years at the last minute. So I've decided to deal with the surgery first, get the results, and then have a clearer picture of the risks/benefits of the MRI. Just taking one step at a time…Thanks for "listening" …

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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.

Liked by monical

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@doyoga

I’ve chosen NOT to do nipple delay (saving) surgery and instead have them removed too. Why? Excuse all cancer risk. And. Why have an extra surgery??worry about necrosis, scar tissue, asymmetrical positioning or nipple falling below center of the implant etc? Added bonus ? No more padded bras to conceal nipples beneath certain tops. I’ll do tattooing eventually – which I find feminine, sensual and too empowering and powerful.
I chose NOT to simply monitor – I wish To live. Out loud. And not worry. And not take Rx meds and have to have MRIs every 6 months. And all that stress. My personal choice is to take these measures now. Vs 49/51 chance of doing it anyway AND having to fight cancer too.
Please understand this is all merely my 2cents worth. You’ll find YOUR path. My v best of wishes darling xxx

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doyoga – I had bi lateral mastectomies and I chose no reconstruction and have no regrets. My breasts at 55+ years old had turned on me in a couple of ways. First, they decided to get cancer and 'stuff' (ha ha) and second they were really unattractive and frankly uncomfortable. Of course, I was older, married many years, they were never much to look at anyway and I had truly started to hate bras. I was surprised that the easiest part of this process was deciding not to get any reconstruction, but it was. Everything else took a toll but only once since the surgery have I even mourned the loss of my breasts. Sure, I wish I never had cancer but I'm so glad I don't have to shop for bras or put one on to run out to get my mail or anything. I bought the prosthetic and have never actually put it on. I resemble a walking pear now but I'm learning all about layering, necklines and how to dress as a truly flat chested woman.
One question I have for you please — I thought I'd do tattoos but I'm concerned about using any color that would show through lighter colored clothing. I do choose slightly thicker fabrics and darker colors but I wonder how that might work with say, a white t shirt? What are your thoughts? I'm still on the tattoo 'fence'. Hugs………..

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@cindylb ….. good q :). And hugs back xxx
One must consider too some of the potential risks of tattoos (allergy to dyes etcetc – rare … but…… hey, we’re all familiar with just how meaningless THAT term might be if we’re ‘the’ 1 🤷🏻‍♀️😊)….
For ME…. I find the tattoo option empowering, adorning, Body art. And not at all something I’d feel the need to hide….. a way of taking back proud control. All of this journey can be a mind game, yes? What stories we tell ourselves(and BELIEVE) to either boost or diminish self confidence and esteem. And how much/where we get to buck (oftentime ridiculous) cultural expectations/‘norms.
If I wore a sheer, MAYBE I’d wear a cami to layer???? Probs not. I see this as no different than ANY woman’s choice (with breasts, or nipples, or tats, or NOT…) ….. am I comfortable with that sheer/white AT THAT moment, for THAT occasion, or not? Sometimes (being me 🤷🏻‍♀️😊😬) I ‘d likely intentionally wear something ‘showy’ of the tattoo art precisely TO invite discussion and awareness…. and buck silly societal ‘norms’ ….other times….. yeah, NOT.
When you had breasts, the decision was the same, no? Were u comfortable with the sheer/white garment….. or not??? (Hypothetical q for YOUR introspection, not necessarily answering ME 😊😊😊😘🙏🏼💓)…. xxxxxxxxx infinitely

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@cindylb

doyoga – I had bi lateral mastectomies and I chose no reconstruction and have no regrets. My breasts at 55+ years old had turned on me in a couple of ways. First, they decided to get cancer and 'stuff' (ha ha) and second they were really unattractive and frankly uncomfortable. Of course, I was older, married many years, they were never much to look at anyway and I had truly started to hate bras. I was surprised that the easiest part of this process was deciding not to get any reconstruction, but it was. Everything else took a toll but only once since the surgery have I even mourned the loss of my breasts. Sure, I wish I never had cancer but I'm so glad I don't have to shop for bras or put one on to run out to get my mail or anything. I bought the prosthetic and have never actually put it on. I resemble a walking pear now but I'm learning all about layering, necklines and how to dress as a truly flat chested woman.
One question I have for you please — I thought I'd do tattoos but I'm concerned about using any color that would show through lighter colored clothing. I do choose slightly thicker fabrics and darker colors but I wonder how that might work with say, a white t shirt? What are your thoughts? I'm still on the tattoo 'fence'. Hugs………..

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@cindylb …. btw…. if you still have that prosthetic and would like to consider sharing it on….. please consider joining Sisterhood of Traveling Mastectomy Products closed group on FB. There’re women there who WOULD def LOVE it 😍 🙏🏼😘

Liked by cindylb

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@doyoga

@cindylb ….. good q :). And hugs back xxx
One must consider too some of the potential risks of tattoos (allergy to dyes etcetc – rare … but…… hey, we’re all familiar with just how meaningless THAT term might be if we’re ‘the’ 1 🤷🏻‍♀️😊)….
For ME…. I find the tattoo option empowering, adorning, Body art. And not at all something I’d feel the need to hide….. a way of taking back proud control. All of this journey can be a mind game, yes? What stories we tell ourselves(and BELIEVE) to either boost or diminish self confidence and esteem. And how much/where we get to buck (oftentime ridiculous) cultural expectations/‘norms.
If I wore a sheer, MAYBE I’d wear a cami to layer???? Probs not. I see this as no different than ANY woman’s choice (with breasts, or nipples, or tats, or NOT…) ….. am I comfortable with that sheer/white AT THAT moment, for THAT occasion, or not? Sometimes (being me 🤷🏻‍♀️😊😬) I ‘d likely intentionally wear something ‘showy’ of the tattoo art precisely TO invite discussion and awareness…. and buck silly societal ‘norms’ ….other times….. yeah, NOT.
When you had breasts, the decision was the same, no? Were u comfortable with the sheer/white garment….. or not??? (Hypothetical q for YOUR introspection, not necessarily answering ME 😊😊😊😘🙏🏼💓)…. xxxxxxxxx infinitely

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doyoga….thanks for the reply and your thoughts. I'm still on the fence but there's time (so far anyway)…..At first I was uncomfortable a bit and felt the need to explain to people that I'd had cancer and that's why I looked so flat. Now I really don't think about it that way. It's just the new normal and one which I personally like better than my previous breasts. I have had so much surgery in the last five years (biopsy, lumpectomy, mastectomy and revision surgery that any more 'procedures' slows me down in terms of tattooing. I do have a tattoo that I got when I was 18 years old…..I was a vanguard, ha ha. It's small and although it raised some eyebrows back then, I have never regretted it and didn't find the tattooing at all painful or uncomfortable. I guess I'll wait a while longer and see if more surgery is necessary. I'd hate to spend the time and then have yet another breast surgeon ruin the art of it. Hugs to you!!

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@doyoga

Walked this path just this past December. Stereotactic failed to get the calcifications seen on Mammogram. ADH found incidentally in the ‘missed’ biopsies. Had savi scout and lumpectomy Jan 3rd. Calcifications benign but more ADH AND ADL.
diffuse enough to put my risk of development into cancer at 49%. I too am negative for BRCA. Have only a paternal aunt who died at 32.
I’ve elected to have prophylactic bilateral mastectomy, including nipple removal. Above pectoral round implants. (I’m v athletic – need my muscles more than my breasts). With Aloderm (cadaver donated skin complex to buffer between my skin and the implant. I’m thin – no fat layer to either graft from, or cushion the implant). Non textured (aka smooth) implants as I don’t wish to take on the possible additional risk of contracting lymphoma (seemingly associated with textured implants). I would’ve preferred teardrop shaped implants(I think) but they’d have to have been textured in order to stay in place. And (see above on textured) Surgery set for March.

Lots of researching. Interviewing multiple surgeons. Introspection.
It’s the right choice for me.
And rest assured you’ll find the right one for u too.
There are a number of FB closed groups that offer terrific support too. Lmk if you’d care fir the names.
Hugs. Keep breathing.

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@doyoga, thank you for sharing. When I asked the medical oncologist the percentage of women who choose to have a prophylatic mastectomy, she looked at me like I had lost my mind. I find information empowering and thought it was a legitimate question in light of the fact that continual monitoring and biopsies seem to be part of my future, particularly with my family history (sister, material aunt, maternal first cousin).

I don't know yet what types of decisions I will make…a lot depends on this next pathology.

Best of luck to you on your upcoming surgery, doyoga..thinking of you!

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