Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

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.

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.

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!!!!

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.

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.

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.

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!

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?

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

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