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.

@jrawls99

I too was diagnosed with adh 2 yes ago and was told by breast surgeon a lumpectomy needed to be performed. I did it. No cancer was detected Mammograms every 6 months etc etc. My question is should I be worried about cancer still in future? Will this reoccur? Its been 2 years since my lumpectomy and my breast is still hard in spot of surgery site .

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Hello jrawls99……..
Sorry about your lump at the surgery site. It can take some time for surgery scars to resolve. Hopefully it isn't painful (?) I found my lumpectomies took at least a couple to a few years to feel 'normal' again. I think you should continue to be monitored by your doctors as long as they feel it would be wise. Perhaps you had the ADH and you won't again (that would be a great outcome) or if it does come back again in your breasts, best to find it early, test and remove it as needed before it becomes an invasive cancer. Although my cancer was lobular hyperplasia, I'm so grateful that I was being monitored closely over the two years following my lumpectomy because it became invasive cancer and was removed at Stage 1 before it had spread to my lymph nodes….a much more easily treated stage a that level.
It's stressful and time consuming and sometimes even painful to go through the tests……but I followed my doctor recommendations and found my cancer early. It would have been even better to have been tested and not found any cancer (ha ha) but I'm glad I followed up. I have a good prognosis moving forward now and the follow up is the reason. Hugs

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Hello everyone I am so happy to have found this board! I was diagnosed with ADH and radial scar in Feb of 2018. I have a very long story. To make it a little shorter though I had a hysterectomy in May of 2017 due to severe pain and 2 large fibroids. Dr insisted I needed to keep my ovaries though because I was to young (44). Dec of 2017 found lump in left breast had U/S which did not show anything. In Jan scheduled me for breast MRI which showed the lump had biopsy which diagnosed ADH. Feb had lumpectomy which got all ADH out and also diagnosed radial scar. In May of this year I had lower abdominal pain again and was diagnosed with a 5cm complex cyst on left ovary. Back to docto and back into surgery to have ovaries out. I am very thankful that none of the tumors/cyts came back cancerous but I have had so many of them this last year. I can’t take Tomoxefin as I ended up with a blood clot after the lumpectomy and I had to many side affects from the arimodex. It is almost a year post lumpectomy and I still have pain in the breast from the surgery. I do ulternating mammograms/MRI every 6 months as I am high risk breast cancer and have as they have put extremely dence breast tissue. What I am wondering is there anyone on here who is in the Same or similar situation. Thank you

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Hello @khauff,

I’m so glad too, that you’ve joined Connect – welcome! While we wait for members to join in with their insights, I’d encourage you to view these Video Q&As where Mayo Clinic experts talk about breast cancer and related symptoms:
https://connect.mayoclinic.org/webinar/video-qa-about-breast-cancer/
https://connect.mayoclinic.org/webinar/facebook-live-genetic-risk-factors-for-breast-gynecological-cancer/

In this video, https://connect.mayoclinic.org/webinar/on-facebook-live-your-guide-to-selecting-the-right-mammogram/ Dr. Victor Pizzitola and Mayo Clinic’s breast imaging team speak quite a bit about imaging for women with dense breast tissue.

I’m tagging @cindylb @wendyh @stansgal @trixie1313 @diane12 @lucyholly18 as they’ve discussed breast pain, and might have some more information.

@khauff, how are you treating and managing your pain?

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@khauff

Hello everyone I am so happy to have found this board! I was diagnosed with ADH and radial scar in Feb of 2018. I have a very long story. To make it a little shorter though I had a hysterectomy in May of 2017 due to severe pain and 2 large fibroids. Dr insisted I needed to keep my ovaries though because I was to young (44). Dec of 2017 found lump in left breast had U/S which did not show anything. In Jan scheduled me for breast MRI which showed the lump had biopsy which diagnosed ADH. Feb had lumpectomy which got all ADH out and also diagnosed radial scar. In May of this year I had lower abdominal pain again and was diagnosed with a 5cm complex cyst on left ovary. Back to docto and back into surgery to have ovaries out. I am very thankful that none of the tumors/cyts came back cancerous but I have had so many of them this last year. I can’t take Tomoxefin as I ended up with a blood clot after the lumpectomy and I had to many side affects from the arimodex. It is almost a year post lumpectomy and I still have pain in the breast from the surgery. I do ulternating mammograms/MRI every 6 months as I am high risk breast cancer and have as they have put extremely dence breast tissue. What I am wondering is there anyone on here who is in the Same or similar situation. Thank you

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Good morning! So sorry to hear you've been through all of this. Hormones…..for some of us they are a tricky mess. I was diagnosed 5 years ago with atypical ductal and atypical lobular hyperplasia. It was the lobular that got me in the end. I had lumpectomy and like you was being monitored for invasive cancer for two years. They found invasive cancer 3 years ago and I opted for a bilateral mastectomy (although a lumpectomy was a possibility). In my case, the ADH and ALH was in my left breast and the invasive ended up in my right (very typical of lobular cancers….both breasts)….hence the mastectomy. And I too had large uterine fibroids and a history of ovarian cysts. I was fortunate in that I was going through menopause at the time and the fibroids and cysts resolved themselves (but not without considerable discomfort and worry)……It's those pesky hormones. The management and leveling of hormones (in my opinion) is very much overlooked for women, resulting often in the serious problems you've experienced and that many of us are dealing with now.
Keep up with the MRI's and Ultrasounds……they saved my life. I was diagnosed at Stage 1 with no spread to my lymph nodes and I was very grateful for the on going monitoring because I caught my breast cancer early. I was unable to use any of the AI drugs…..like you, serious side effects but I have made as many positive changes as possible to improve my health and hopefully calm those hormones (diet, losing weight, no alcohol, quitting smoking, supplements – Vitamin D, Omegas, Tumeric, etc).
Sometimes it doesn't come back……….I am hoping that for you, but do be diligent in getting your tests so you can catch it early.
You've been through a lot already and you're young. I am so sorry. Stay healthy, stay positive and perhaps ask that your doctors check your hormone levels (they are numerous methods)…so you can monitor that as well. It can help you make the decision (as needed) on the AI's
Hugs and wishes for good health to you!

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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.

Liked by cindylb

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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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So sorry you're going through this. Five years ago I was diagnosed with ALH (lobular vs. ductal) and followed the same course of treatment you are going through now, so I think you're being treated with the standard protocol…..so that is good. The other 'good' news is that it sounds like you've caught your atypical cells early. During the surgery the area in question will be removed and pathology will analyze the tissue, which will give you a lot more information. Depending on the amount of tissue and those results, following the surgery, you really will have a pretty good picture of your situation. Then you will be monitored very closely to see if you get more atypical cells or cancer at some point. Hang on to the good news that you are getting this taken care of and also note…….there are a whole lot of us out here who have been through what you are going through and we're still here, fighting and going on about our lives. My ALH did become an invasive cancer 3 years ago BUT again, I was lucky…..it was Stage One at diagnosis and was highly treatable. That said it doesn't mean you won't be worried or sad about this, but you're doing all you can and you'll have a more complete diagnosis soon and a path forward. Waiting is the worst, information is power and we're all here for you. Hugs.

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@cindylb

So sorry you're going through this. Five years ago I was diagnosed with ALH (lobular vs. ductal) and followed the same course of treatment you are going through now, so I think you're being treated with the standard protocol…..so that is good. The other 'good' news is that it sounds like you've caught your atypical cells early. During the surgery the area in question will be removed and pathology will analyze the tissue, which will give you a lot more information. Depending on the amount of tissue and those results, following the surgery, you really will have a pretty good picture of your situation. Then you will be monitored very closely to see if you get more atypical cells or cancer at some point. Hang on to the good news that you are getting this taken care of and also note…….there are a whole lot of us out here who have been through what you are going through and we're still here, fighting and going on about our lives. My ALH did become an invasive cancer 3 years ago BUT again, I was lucky…..it was Stage One at diagnosis and was highly treatable. That said it doesn't mean you won't be worried or sad about this, but you're doing all you can and you'll have a more complete diagnosis soon and a path forward. Waiting is the worst, information is power and we're all here for you. Hugs.

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First off thank you everyone for your posts as they really do help.. Cindylb question for you? You had ALH 5 years and 2 years after that you had invasive breast correct? Did they have you on any medication after the ADH such as tomoxafin or arimidex? I can't take tomoxafin because I had a blood clot after the lumpectomy so they won't put me on that and I had way to many side affects from the arimidex so I am not on anything. I have a couple woman in my family that have had breast cancer and my paternal grandmother died from it (granted when she had they didn't have as much technology or advanced chemotherapy as they do now). According to my doctor it is now if I get breast cancer it is when I get it. I do mammos/Breast MRIs alternating every 6 months. according the doctors I have very extreme dense breasts. My husbands side of the family all of BRCA1 jean so concerned about my daughter as with that on my husbands side and now me having this doctor said she needs to start having mammos at age 25. Thank you for your reply.

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@khauff

First off thank you everyone for your posts as they really do help.. Cindylb question for you? You had ALH 5 years and 2 years after that you had invasive breast correct? Did they have you on any medication after the ADH such as tomoxafin or arimidex? I can't take tomoxafin because I had a blood clot after the lumpectomy so they won't put me on that and I had way to many side affects from the arimidex so I am not on anything. I have a couple woman in my family that have had breast cancer and my paternal grandmother died from it (granted when she had they didn't have as much technology or advanced chemotherapy as they do now). According to my doctor it is now if I get breast cancer it is when I get it. I do mammos/Breast MRIs alternating every 6 months. according the doctors I have very extreme dense breasts. My husbands side of the family all of BRCA1 jean so concerned about my daughter as with that on my husbands side and now me having this doctor said she needs to start having mammos at age 25. Thank you for your reply.

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khauff………I had ALH for 2 years which then turned out to be invasive lobular. It has been a total of 5 years now since I first discovered I had ALH and 3 years since I had treatment for the invasive lobular carcinoma/cancer. So, it's been a total of five years. I am now 61, so this all started when I was 56 years old, which is pretty typical. Because it was lobular cancer I chose to have a bi lateral mastectomy. The first ALH was in the left the invasive in the right breast. It looked like a slippery slope with both breasts involved so I chose the mastectomies. With ductal it's not so common for both breasts to be involved so a lumpectomy and monitoring would be very reasonable. I am quite content with my decision to remove both breasts and reduce my risk as substantially as possible but again…….lobular is tricky like that. I tried tamoxifen with ALH and two AI's following surgery. All of them made me quite ill and so I had to opt out of that treatment. I am very sensitive to any drugs so that is another reason I went to the mastectomies. Due to that treatment I have very low risk of recurrence (even without the AI's – about 8%) but I guess you never start worrying. I'm still monitored every 6 months. I have NO history of breast cancer in my family – on either side so I was surprised BUT I had a long history of dense breasts, cysts, and benign tumors. Also several other risk factors. I suppose I will never feel like I'm out of the woods on this and I probably won't ever be free of the testing and monitoring but I'm trying to stay positive, be proactive with diet and supplements and just carry on. I was so lucky (as you are) to get on this quickly and do all you can to prevent an invasive cancer and cancer that spreads to the lymph nodes if possible. I'm hoping I can cheer you up during a time when I'm sure you're very worried. There are women on the Mayo Support Site here who are doing quite well and fighting the 'good fight' with every stage of cancer. They are better than ever at treating breast cancer. You'll know so much more after your surgery. The pathology will give you and your doctors a lot more information and that will help you know how to move forward. Don't get me wrong…….breast cancer isn't all rainbows and sunshine and stuff but it can be treated and you are not alone. Keep me and all of us posted. All the women on this site are very supportive and have great advice. p.s. I have a daughter too and she recently found a breast lump. It was terrible for me BUT it was an inflamed gland and I'm hopeful that she won't have to go through this or that they'll have figured out incredible treatments by the time she might have to face this. My daughter just had her first mammogram and ultrasound at age 30 and it's all clear so far. Encourage your daughter to be proactive and do the recommended screenings. The key is to find it as early as possible and smack the hell out of it. Ha ha. Hugs!!!!

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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.

Liked by cindylb

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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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