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.

@kanaazpereira

Welcome to Connect @elsajohnson @ckf1317 @icya2282.
This is absolutely the right group, and I'm so glad you've joined this incredible community. According to the American Cancer Society, women with Atypical Ductal Hyperplasia (ADH) are at a higher risk to develop breast cancer as women without it. But they also note that most women with ADH don’t develop breast cancer. Still, having ADH means you need to regularly follow up with your doctor for breast cancer screenings. Here's more detailed information from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/atypical-hyperplasia/symptoms-causes/syc-20369773

You are not alone in experiencing the frustration of not being taken seriously by your doctors; if there is one thing I've learned from Connect members it's not give up until you find the right physician who can help you in the best possible way. With regard to BI-RAD, here's what I found:

Doctors use a standard system to describe mammogram findings and results. This system (called the Breast Imaging Reporting and Data System or BI-RADS) sorts the results into categories numbered 0 through 6.
Definition of BI-RAD 6: Known biopsy-proven malignancy – Appropriate action should be taken. https://www.cancer.org/cancer/breast-cancer/screening-tests-and-early-detection/mammograms/understanding-your-mammogram-report.html
Are you able to get a second opinion from an oncologist, @elsajohnson?

I'm tagging @roch as she recently shared her diagnosis of focal ADH, and I'd also like to invite @violetita07 @cindylb @diane12 @casualobserver to join in with their thoughts about preventive/prophylactic mastectomy. You can view the discussion taking place on Connect, here:
https://connect.mayoclinic.org/discussion/bilateral-mastectomy-or-not/

Jump to this post

Good question @elsajohnson. "Since I don’t have cancer, can I see an oncologist? Will an oncologist see me since I don’t really have cancer?"

@cindylb, when you were diagnosed with ADH at what point were you referred to an oncologist?

REPLY
@kanaazpereira

Welcome to Connect @elsajohnson @ckf1317 @icya2282.
This is absolutely the right group, and I'm so glad you've joined this incredible community. According to the American Cancer Society, women with Atypical Ductal Hyperplasia (ADH) are at a higher risk to develop breast cancer as women without it. But they also note that most women with ADH don’t develop breast cancer. Still, having ADH means you need to regularly follow up with your doctor for breast cancer screenings. Here's more detailed information from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/atypical-hyperplasia/symptoms-causes/syc-20369773

You are not alone in experiencing the frustration of not being taken seriously by your doctors; if there is one thing I've learned from Connect members it's not give up until you find the right physician who can help you in the best possible way. With regard to BI-RAD, here's what I found:

Doctors use a standard system to describe mammogram findings and results. This system (called the Breast Imaging Reporting and Data System or BI-RADS) sorts the results into categories numbered 0 through 6.
Definition of BI-RAD 6: Known biopsy-proven malignancy – Appropriate action should be taken. https://www.cancer.org/cancer/breast-cancer/screening-tests-and-early-detection/mammograms/understanding-your-mammogram-report.html
Are you able to get a second opinion from an oncologist, @elsajohnson?

I'm tagging @roch as she recently shared her diagnosis of focal ADH, and I'd also like to invite @violetita07 @cindylb @diane12 @casualobserver to join in with their thoughts about preventive/prophylactic mastectomy. You can view the discussion taking place on Connect, here:
https://connect.mayoclinic.org/discussion/bilateral-mastectomy-or-not/

Jump to this post

Hello!
I was diagnosed with micro-calcifications at my regular, yearly mammogram and referred by the Sally Jobe mammography center to an oncologist who recommended a biopsy. From the biopsy which showed ADH and ALH (ALH more predominantly) I was referred to a surgeon.. The surgeon did a lumpectomy and with that extra tissue they were able to determine that I had Stage "o" cancer. Following lumpectomy all my follow up care was with my oncologist who recommended Tamoxifen (which I couldn't use without serious side effects) and due to that 'failure' she referred me to a homeopathic doctor for diet, nutrition, etc. I highly recommend that care as well. I learned a lot about how to improve my health and what I hoped might stop the breast changes. Unfortunately I developed invasive Lobular Carcinoma within two years and following my bi lateral mastectomies I got the full picture of my breast 'health', which was not good. I had invasive lobular in just one spot but also atypical ductal in many areas, atypical lobular in many areas, cysts and all sorts of bad stuff pretty much everywhere. It was only a matter of time before more cancers would spring up. My decision to be very aggressive with my cancer didn't come with my initial ADH and ALH diagnosis. I had benign lumps removed over the years, cysts, multiple hormone issues throughout my life and various risk factors.
Some doctors consider ADH and ALH as 'cancer' some do not. You don't want to over treat a patient but I am glad I was on top of this because I caught my cancer before it had spread and before radiation or chemo were even recommended or considered. The surgery was the easy part of my decision making. The other treatments, including aromatase drugs were the more difficult part for me. I don't tolerate them well. I think a consult with an oncologist to discuss options for treatment makes complete sense at the early stages.

REPLY

That's all great info, thank you.
@cindylb, you mentioned your referral to a homeopathic doctor for diet, nutrition, etc… could you share some of what you learned (about improving your health and what you hoped might stop the breast changes) with us?

REPLY
@icya2282

That's all great info, thank you.
@cindylb, you mentioned your referral to a homeopathic doctor for diet, nutrition, etc… could you share some of what you learned (about improving your health and what you hoped might stop the breast changes) with us?

Jump to this post

I was unable to take aromatase inhibitors such as Letrozole,etc or tamoxifen.. The drugs caused serious side effects for me (I'm not good with many pharmaceuticals due to my allergies. So when I was unable to take them my oncologists referred me to a homeopathic doctor and clinic. The goal was to reduce my hormones or stabilize them to more normal levels. My breast cancer was highly estrogen positive. I had a long history with hormone problems that went pretty much undiagnosed, untreated and ignored for a lifetime (severe menstrual periods starting at age 8, difficulty and illness during pregnancy, and a long and difficult menopause). Via the naturopathic or homeopathic doctor I learned (via simple blood tests) that I had virtually no progesterone to counteract the estrogen in my system. I had higher testosterone, which can 'convert' to estrogen in the body post menopause, so I was an 'estrogen bomb' waiting to explode and it did, in the form of breast cancer ultimately.
There were additional tests done to tackle my allergies and some intestinal issues. Here is what I learned:

I needed to lose weight which can cause additional estrogen production in the body. I lost 30 pounds – weight I had put on during menopause.
I cut out as much processed food as possible, cut out chemicals in my diet and started using organic and GMO free foods and eating more 'natural' foods. I, like most people, eat too much sugar. I cut back on processed sugars.
I changed shampoos, lotions and other personal care items that included PABA, which is a preservative in those items that can convert to hormones (estrogen) in your body. I use a lot of lotion and I was slathering PABA on my body a few times a day. Anything I could do to cut down on estrogen was a plus. (I still miss some of those products however……some of the more 'natural' products aren't as pleasing to me as my old 'stand bys')
I found out I was Vitamin D deficient (not something that had ever been tested). I got a prescription strength Vitamin D supplement from my doctor and continue to take Vitamin D. Vitamin D deficiency has been shown to be one factor in breast (and other) cancers. Vitamin D is less of a 'supplement' and more of a hormone in your body and is essential to proper hormone function. The best way to get Vitamin D is in the sun but often we're all trying to avoid skin cancer – so I get 15 minutes of sun per day, without sunscreen, as well. Vitamin D also helps combat depression which is so common, especially for those who have cancer.
I'm not a yogurt fan but I found a yogurt drink I have each morning that I can tolerate and any digestive problems I had were gone (after a lifetime of them) in about 6 months. Keeping your gut healthy helps your whole body function better.
I added turmeric to my diet. Tumeric has anti-inflammatory qualities and has been shown in numerous studies to help prevent cancer.
The one thing I struggle with, which I'm sure contributes to cancer, is stress. I exercise and 'try' to meditate but being seriously Type A, I know the stress I'm under and don't control well also contributes to an unhealthy immune system.
I quit drinking all alcohol (all sugar and carbs) and I sheepishly admit I was a smoker. I am now a non-smoker (hardest thing I ever did).

These are just a few of the things I changed. Of course, I still got invasive cancer but I am just about to hit my 3 year anniversary from my mastectomies and so far so good. The combination of medical care and natural methods to improve my body's natural defenses is a work in progress. My medical doctors supported all these changes and I continue to research and try to improve the metabolism and structure of my body. I come from a time when Tang and Space Food Sticks were considered acceptable foods. I really didn't have a healthy outlook on food.

Because I don't take the aromatase inhibitors I finally asked my medical team why they didn't check women's hormones regularly to see what they had going on inside their bodies. Their answer was that all the breast cancer patients were taking the drugs so there was no need. Makes sense I guess…….but a baseline of where your hormones are that are fueling the cancer (if it's hormone positive) seemed like a simple test that would give women information they need. I have blood tests for my hormone levels every six months and I have NO ESTROGEN…..NO PROGESTERONE and little or no TESTOSTERONE. I'm not sure but I think that makes me non-human, but………no estrogen and no progesterone means less fuel for the cancer to come back. I have experienced some of the same side effects due to the hormone loss that one would get with the aromatase inhibitors – hair loss, dry skin, etc. but none of the bone pain, depression, etc. from my low hormone levels.

I'm not as strict with myself as I should be. I still like a piece of chocolate cake now and then and I wouldn't classify myself as a health nut (not that disciplined) but I feel better, look better and I continue to try to get my old body in shape for the next decade, which I hope I'll have and that will be cancer free.

REPLY
@cindylb

Hello!
I was diagnosed with micro-calcifications at my regular, yearly mammogram and referred by the Sally Jobe mammography center to an oncologist who recommended a biopsy. From the biopsy which showed ADH and ALH (ALH more predominantly) I was referred to a surgeon.. The surgeon did a lumpectomy and with that extra tissue they were able to determine that I had Stage "o" cancer. Following lumpectomy all my follow up care was with my oncologist who recommended Tamoxifen (which I couldn't use without serious side effects) and due to that 'failure' she referred me to a homeopathic doctor for diet, nutrition, etc. I highly recommend that care as well. I learned a lot about how to improve my health and what I hoped might stop the breast changes. Unfortunately I developed invasive Lobular Carcinoma within two years and following my bi lateral mastectomies I got the full picture of my breast 'health', which was not good. I had invasive lobular in just one spot but also atypical ductal in many areas, atypical lobular in many areas, cysts and all sorts of bad stuff pretty much everywhere. It was only a matter of time before more cancers would spring up. My decision to be very aggressive with my cancer didn't come with my initial ADH and ALH diagnosis. I had benign lumps removed over the years, cysts, multiple hormone issues throughout my life and various risk factors.
Some doctors consider ADH and ALH as 'cancer' some do not. You don't want to over treat a patient but I am glad I was on top of this because I caught my cancer before it had spread and before radiation or chemo were even recommended or considered. The surgery was the easy part of my decision making. The other treatments, including aromatase drugs were the more difficult part for me. I don't tolerate them well. I think a consult with an oncologist to discuss options for treatment makes complete sense at the early stages.

Jump to this post

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 .

REPLY
@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 .

Jump to this post

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

REPLY

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

REPLY

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?

REPLY
@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

Jump to this post

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!

REPLY

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.

REPLY
Please sign in or register to post a reply.