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.

Hi doyoga,
Several years ago > than 10 years ago I had a lump left breast taken out of breast that showed atypical hyperplasia from a local breast surgeon. Over the years I had micro calcification. This past year at 54 years old I was diagnosed with breast cancer in the same spot. I travel now an hour to an urban area to a great breast cancer surgeon there told me that back then I should have insured that there was clean surgical site borders insured and started on tamoxifen. Hind sight is 20/20 and we know more medically now then 10-15 years ago.
Since then I have discovered I have the ATM gene and six women in my family with breast cancer. I had a left breast mastectomy.
Every breast cancer treatment is a personal and private family desicion, I hope all goes well with you.

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@doyoga

I had Micro calcifications that had changed over 3 years. Stereotactic biopsy failed to locate them so I had a subsequent lumpectomy. The biopsy coincidentally found ALH. The lumpectomy showed the calcifications to be benign but the hyperplasia diffuse -as ALH AND ADH.
If fewer than 3 foci (‘locations, if u will) are found, I’m told my risk of breast cancer goes from around 11% in the general population to around 35%. More than 3 foci and we’re at 49%.
I do not have the BRCA gene. Am 51, lifelong vegetarian/vegan, yoga instructor/Ariel silks yoga and dance practitioner, slim, athletic, non smoker ….
I’ve elected to have a bilateral mastectomy with pre pectoral (above the muscle) dual phase reconstruction.

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doyoga – Hugs and good wishes to you on the bi lateral mastectomies. I too found my breast cancer initially via microcalcifications (not a lump). ALH can present that way. Post mastectomy there will be a great deal of pathology done on the tissue that is helpful in planning for the future. My pathology showed a large number of bad situations 'in the making'. I am glad I chose to move forward with the mastectomies, it was a good choice for me.
I found the surgery pretty easy. I think the hardest part of it for me was the associated worry, not so much pain or the actual surgery side effects. Keep us all posted, we're all here for you.

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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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Hey there. Yes. I’m scheduled for bilateral mastectomy in 2 weeks. I had a cluster of Micro calcifications that led to stereotactic biopsy. That failed to obtain the calcifications so lumpectomy was scheduled. In the interim, pathology of the biopsy shows (totally unexpectedly and coincidentally ) ALH (lobule). Lumpectomy removed calcifications (benign) but found also diffuse ADH and ALH. greater than 3 foci puts risk at 49%. So. Off with the breasts. I’m 52, vegan, non smoker, no BRCA bad genes. Very athletic. I need my pec muscles so have opted for expanders and above pec implants. For me, 6 month checks and MRIs and drugs ARE not my cup of tea. I’d rather excise the risk now, and heal from that, vs a 50/50 risk of having to do it anyway, AND go through fighting cancer, chemo and radiation. I feel v fortunate and grateful to have found it so coincidentally. And have no hesitation taking proactive preventative steps. It’s clearly a very personal choice…I researched read, interviewed multiple surgeons, researched more etcetc. This is the decision that feels unequivocally authentic for me. Hugs to you. Xxx

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@doyoga

Hey there. Yes. I’m scheduled for bilateral mastectomy in 2 weeks. I had a cluster of Micro calcifications that led to stereotactic biopsy. That failed to obtain the calcifications so lumpectomy was scheduled. In the interim, pathology of the biopsy shows (totally unexpectedly and coincidentally ) ALH (lobule). Lumpectomy removed calcifications (benign) but found also diffuse ADH and ALH. greater than 3 foci puts risk at 49%. So. Off with the breasts. I’m 52, vegan, non smoker, no BRCA bad genes. Very athletic. I need my pec muscles so have opted for expanders and above pec implants. For me, 6 month checks and MRIs and drugs ARE not my cup of tea. I’d rather excise the risk now, and heal from that, vs a 50/50 risk of having to do it anyway, AND go through fighting cancer, chemo and radiation. I feel v fortunate and grateful to have found it so coincidentally. And have no hesitation taking proactive preventative steps. It’s clearly a very personal choice…I researched read, interviewed multiple surgeons, researched more etcetc. This is the decision that feels unequivocally authentic for me. Hugs to you. Xxx

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Good for you. I opted to watch and wait after the ALH and ended up with bi lateral mastectomies 2 years later anyway at Stage 1 (no spread to lymph nodes). Knowing now what I didn't know then………I would have opted for the mastectomies at Stage 0 ALH…..my cancer physical therapist did that…….took them off at a very young age because she'd seen how quickly and unexpectedly it can spread. I've come out on the other side now BUT……there was tension every six months with mammograms, ultrasounds and MRI's and ultimately having to do the surgery anyway. Also, the pathology of my breast tissue following the mastectomies was a bit of everything and ultimately it was going to be a very bad outcome. My breasts were growing every kind of bad thing you can imagine. It sounds like you're very body aware and pro active and that will help you to move through the surgery and recovery well.

My background is in large scale media/public events and I learned a mind set of looking for anything and everything that can go wrong. It sounds negative but it's not……….I did exactly what the doctors say not to do: reading every bad thing that could possibly go wrong. The good that came out of that for me was knowing what was possible, being prepared for complications and having a head start on resolving them. That's my nature but for me…..it's still my method of dealing with cancer. Learn all you can and be prepared if those things occur and grateful when they don't! Keep in touch and let us all know how your surgery and reconstruction are going. Hugs.

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Ok, so now that every person in my life believes I am just crazy I am finally reaching out here. Any information or suggestions are greatly appreciated.
I am a 37 yr old female fyi.

My story started Last yr, so I will give the shortest version with the most information. Aug of 2017 my son was in the hospital having surgery. I got very sick, I stayed sick well into Feb of 2018. Cough, mucus drainage, night sweats, loss of weight and over all just ill.Multiple rounds of antibiotics, flu tests ect. No blood work at this time. Nothing helped I had several times had fevers of 106 per my thermometer but believe 104 is more accurate. My mom would rush over and help me get the fever down, meds, showers ect. Docs had no information at this time. Finally I started feeling better.

I developed what I thought was a cyst in my upper eyelid of my left eye. If I wore my contacts it became several inflamed. So I stopped.

Moving forward May 2014 I am still getting "sick" very easy but feel it is just my body us run down. I noticed one day I was very dizzy and had a sever migraine. I drank water and relaxed ( at this time this was probably my 5th migraine in my life). That night I noticed I had a slur to my words, my daughter points out my left side of my mouth is drooping. I think ok this is related to my migraine. The next morning I have left sided weakness. At this point I am scared I go to the er and am told Bells palsey.
Moving forward. I have several more episodes of this but they were accompanied by extremely low BP and migranes that continue. Left sided weakness is unexplained. End result after MRI and neurologist apt is I have migraines with a swollen lymph node in the back of my neck on left side. I was informed I have several lesions in my brain that are "brain moles" I know have what appears to be permanent left sided facial paralyses of the lower part of my face that includes the left side of my tongue.

At this point I am having blurred and double vision that is worse at time. I contribute this to migraines. What I believe to be a sty is still there (eye doctor confirms it is not a sty but a growth or lump now and I have had a substantial change in my vision)

The day before nero apt I had a very sharp pain in my right breast, I feel the area and discover a lump the size of a pea.

So off to first mammogram, mammo shows nothing as breast tissue is to dense so im given a ultra sound area is concerning f/u in 6 months. I go to the Moffat cancer center for a second opinion. By now I have several areas in my breast my armpits and groin area that are hard lumps. Moffat says its enlarged lymph nodes and f/u in 4 yrs.

I am at a point I know something's not right. I have had bone pain almost all my life, joint pain since I was a child. My teeth are rotting and I just feel defeated. So I find a great new primary who takes time and listens. Tons of new tests are ran, including new ultrasound of breast.

I show I am a carrier for EBV and salmonella. and ultrasound shows calcified lymph nodes. Bone density shows I have sever osteoporosis and osteoarthritis. I am now having difficulty with breathing at times. and my primary is concerned of the left scapula pain iv had for years that causes numbness and tingling down my arm. We decide to I should see a plastic surgeon and see if he would biopsy the lymph nodes.

Plastic surgeon agrees to biopsied the left arm pit lymph node. well it came back today it was not a lymph node at all it was Breast tissue with PASH and ADH.

He refereed me back to my primary. Now I wait. Again. I know I am freaking out but what else can I do to advocate for my self. I know I need to do something I just wish I had a doctor who knew what to do with me and the waiting and the tests are killing me.

Oh fyi I also had genetic testing done through Tellmegen I am still waiting on those results.

Thank you for reading all of this and thank you in advance for any information you may have.

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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

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.

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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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