Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

@roroj

I tried to use the hormones but I wasn't able to, due to side effects. I tried Letrozole, Arimidex, and one other (whose name escapes me now). All of them caused me severe depression and joint pain. After I failed all three.....I requested a hormone blood work up for my estrogen and progesterone and testosterone. I had literally none of any of them (I had been severely limited on progesterone my whole life but didn't know until I had breast cancer at the age of 53 and was post menopausal)....so my breast cancer was estrogen positive 99%. The hormone imbalance, in hindsight, was obvious to me once I had the testing done. I was grateful for the testing because it helped me to see what had been going on for me my whole life. I periodically request the hormone tests to see my status and it's remained....none of those little buggers exist anymore, just traces. So, it's difficult for the breast cancer to grow in those circumstances, but again, I am now post menopausal and that makes a huge difference. Also, I'm not sure my situation is common, where the hormone balance is so bad in general. It has been nine years since my Stage 0 diagnosis and seven since my Stage 1 diagnosis and bi lateral mastectomy, no recurrance so far (thank goodness). I 'think', had I chosen lumpectomy I would have had to try and tolerate the AI's perhaps, but I don't know. Many women I know personally used the AI drugs successfully with lumpectomy and mastectomy.....so it's always worth a try. I tried and failed, but that's just me. Hope this helps. Hugs.

So I’m ER strong positive that’s why they told me to take the tamoxifen so do you think this medicine it will help me to stop the second cancer on the other side

There are many factors involved but yes, reducing the hormones affecting your breast tissue will help reduce new or recurring cancers. I had Lobular Cancer (not ductal)....not sure what your type of cancer is...but Lobular, the type I had tends to show up in both breasts over time. Ductal is not so likely to do that. That was a main factor in my decision making regarding the bi lateral mastectomy......I had cancer over two years in both breasts. That doesn't necessarily happen as often with ductal types of cancer. The AI drugs are recommended for women with all breast cancers. If you reduce the hormones, you reduce the chance of new cancer or the cancer recurring. I do feel trying the drugs is a good idea. Many women use them with minimal or no side effects. Talk with your doctors about your type, stage and chance of additional cancers in the future. Ask questions and make sure you get answers you understand and feel comfortable with. I was lucky to have a very good oncologist and surgeon when I was first diagnosed who were very open minded and helpful. My second time around with the second breast cancer I also had a great oncologist (who I have now) who was helpful with information on reducing risks of cancer coming back. Make sure you have doctors you can talk with and feel comfortable with.....it's very important for your mental health. Also, check out the conversations here on the Connect site for women discussing and using AI drugs and other information. These are tough decisions. Ultimately you have to decide what's best for you but it's hard to wade through the options when you get a cancer diagnosis, it's so scary and it upends your life. The support on this site, from other women going through this, was invaluable to me and that's why I'm happy to share my experience and thoughts. It's most important you feel your doctors are listening to you and offering you the support and information you need but it's still, in the end, your decision and that can be very stressful. Hugs

During my yearly mammogram the pathologist found very small microcalcifications. I was sent for a magnification mammogram. The head pathologist recommended I have a stereostatic biopsy. I was then sent to a breast cancer surgeon and she performed a lumpectomy. Then I was sent to an oncologist and he recommended that I try anastrozole to stop my body from producing estrogen. I was told I am at a higher risk 4x for getting breast cancer. It doesn't run in my family that I know of. I am not a candidate for tamoxifen because of blood clots so anastrozole is the better treatment. I would get a second opinion from a breast cancer surgeon. I hope you get the answers you need.

Glad you posted as I’m in a similar place. Core needle biopsy showing ADH and waiting for my surgical appointment which I assume will be to schedule a surgical biopsy of more tissue. Would love to understand the significance given the ADH. My understanding is that the surgery is more diagnostic than treating.

I would highly recommend seeing another breast surgeon . I had my ADH removed 13 years ago . I understood that if you don’t it will turn into cancer . I will now have a 2nd lumpectomy because I have it again in another area . I hope you consult with another breast surgeon.

@tigerjulie, I was told that the excisional biopsy/ lumpectomy was done to examine the ductal cells and to see if the cells were outside of the duct. Pathology report stated normal margins. It is best to ask your surgeon and physician questions. I hope all goes well.

Good Morning,
Since my lumpectomy and diagnosis of ADH 1 year ago, I have had 2 normal mammograms. The doctor now wants me to go to yearly mammograms with every 6 month clinical breast exams and MRI every 2 years. Has anyone else been so quickly moved back to yearly mammos? No family history and no genetic.markers but I still feel anxious about this new plan.

This is my 2nd breast dr. I have had so many issues with the healthcare system where I live. I am now trying to get into a breast care center in MA but was curious of others monitoring plan with ADH. Thank you in advance!

I was diagnosed with ADH in August 2022. I am taking anastrosal. I believe my breast surgeon told me that if I have 2 negative mammograms then I will then only have mammograms yearly. I have a mammogram in April, so I will ask her to confirm what she told me.

Hi everyone!
I’m 42 and found a 5mm mass on my yearly check up. Did a FNB and the result is atypical C3. Differential diagnosis intraductal papilloma vs ADH.
I work in the pathology dep as a researcher and my md colleague suggested a surgical biopsy to have a clear picture of the lesion.
I’m scheduled to have surgery on the 9th of May.
Of course I’m reading all kinds of papers about ADH and the likelihood of DCIS or IDC with it.
I have very dense breast and a hystory of fibroadenomas and cysts since I developed a breast. I had sonography once a year and started with mammography+ sonography 3 years ago.
No need to say I’m scared and suffering for anxiety (taking medications).
I was taking in consideration double mastectomy even before this happened and now it is the only thing I’m thinking about.
Off course all the doctors I spoke to are against it.
I’m looking to find other women with the same experience.