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 Support Group.

@roroj

Did you take the hormone therapy

Jump to this post

@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.

REPLY
@cindylb

@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.

Jump to this post

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

REPLY
@roroj

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

Jump to this post

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

REPLY

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.

REPLY

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.

REPLY
Please sign in or register to post a reply.