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Anyone dealing with Atypical Ductal Hyperplasia (ADH)?
Breast Cancer | Last Active: 14 hours ago | Replies (231)Comment receiving replies
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/
Replies to "Welcome to Connect @elsajohnson @ckf1317 @icya2282. This is absolutely the right group, and I'm so glad..."
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?
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.
I was diagnosed last year with atypical ductal hyperplasia had breast excisional biopsy done. However, after that there is no follow up every 6 months and no medication given. Wonder if the right path is to follow or should I get a second opinion. I'm just concerned because I have read a lot about it, and I see that it is recommended to take medication for 5 years. I would appreciate any advice thank you.
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Hi Kanaz, thanks so much for the reply and the confirmation that I am in the right forum. I can’t tell you how much that means to me. Ever since my diagnosis, I have felt that I am I this twilight zone: not cancer, but benign and yet not really entirely benign. I don’t want to people to think that I am one of those who makes a big deal of a small health issue, but at the same time, based on what I read about ADH, I am not exactly sure ADH is just something that is no big deal.
Thanks also for the link on the Bi-RADS meaning. That was my understand also re: BI-RADS 6, which is supposed to be biopsy proven malignancy. This is why I am confused to see this on my radiologist report after the CNB with ADH finding. No, I haven’t seen an oncologist yet. Since I don’t have cancer, can I see an oncologist? Will an oncologist see me since I don’t really have cancer?