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.

@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.

REPLY

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

REPLY

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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@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" …

Jump to this post

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.

REPLY
@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

Jump to this post

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

REPLY
@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………..

Jump to this post

@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 😍 🙏🏼😘

REPLY
@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

Jump to this post

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!!

REPLY
@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.

Jump to this post

@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!

REPLY
@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.

Jump to this post

@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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@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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