Pathology with close margins-ADH or DCIS
I had surgery on 10/20 to remove IDC and DCIS and a sentinel node. I have low grade er/pr + her2- right breast cancer diagnosed in September. I had a reduction of the left breast and a lift. My general surgeon was able to get wide margins of the tumor. The lymph node was clear. Nothing in the left breast at all. In taking the tumor out with like 11 mm margins the lateral side showed either Atypical Ductal Hyperplasia or DCIS at 1mm margin. This sample has been sent to Stanford for a second opinion. I’ve been told we could go back in to take more, or maybe the radiation will take care of it? Im still waiting to hear more opinions and the final result. Does anyone else have experience with this? If it’s ADH does it still need to come out given that I already had cancer? Can I rely on Radiation to take care of either diagnosis or should I just brace for a second surgery? Am I in need of another mammogram or US to look for additional micro calcifications? Btw I did have a breast mri after my biopsy and nothing additional was found as far as I understand it. Im 54 and want to get through this the best I can and go on to live a good long life.
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@bestpommom, you're asking a lot of really good questions. I'm tagging other members like @lux7 @leesal123 @memawjax @karenpow @margo19 @cindylb @khauff @char820, who have experience with Atypical Ductal Hyperplasia or DCIS to share their thoughts as you prepare to talk with your oncology team.
You can read more in this related discussion too:
– Anyone dealing with Atypical Ductal Hyperplasia (ADH)? https://connect.mayoclinic.org/discussion/anyone-dealing-with-atypical-ductal-hyperplasia-adh/
Big hugs to you! It sounds like you are actively managing this very well. Your doctors will have a protocol for monitoring your cancer in the future and your breast tissue. They will also know the statistics for how much the radiation will eliminate and next steps. I had a bi lateral mastectomy so they studied all the tissue (as they are with you) and they can get an idea on what else might be happening from that and can make recommendations. Others on the site will respond and probably have a situation more similar to yours than I have and can and will share their thoughts. I hope you are managing as well as any of us can expect under the circumstances.
@bestpommom First let me say I am so sorry to hear that you are having to deal with all of this. ADH alone does not necessarily need to come out. Although some recommend it comes out because if it is found on a biopsy DCIS can still be hiding so they will recommend taking the whole thing out so they can make sure there is nothing else. Other clinics will take the watch and wait approach. It is completely up to you though on what you feel comfortable doing. If they sent the biopsy away for a second opinion I would wait for that opinion and see what that comes back with. Usually with ADH radiation is not involved only surgery if that is what you chose as ADH is not cancer. If it is DCIS then yes you would want to remove it and do radiation. Will you be doing Chemotherapy also for the IDC or not? What kind of monitoring will they be doing after to make sure nothing comes back? Will you be on any Aromatase inhibitors post radiation/surgery? Hugs to you!
Thank you for your response. I will not be doing chemotherapy as my Mammaprint showed very low risk, less than 1% chance of reoccurrence and chemo would not be of any help in my case. I was planning on doing the recommended 16 rounds of radiation. I am less than two weeks out from my surgery. I have a video call with my Oncologist tomorrow to discuss my pathology and I assume Letrozol which she is recommending I take since my cancer was 100% estrogen driven and 90% progesterone fed. I was on HRT when I got cancer. I stopped taking that when I found out there was a problem. I’ve done a lot of reading on ADH found during surgical excision and I’m a little worried about what else may be lurking in my breast or I’m looking at doing this all over again in the future. I don’t yet know how the aromatase inhibitors will affect me or how I will feel on them. I can totally see why people just get a mastectomy and be done with it.
I was diagnosed with ADH in 2018 and had a lumpectomy. I was given the option to take Arimidex which I did decide to take but only took it for 3 months as I had every single side affect you can possibly have from it. I am 49 years old now have been doing mammograms/MRI's alternating every 6 months since and have not had anything else found. I have been an oncology nurse for 15+ years and the other nurses I work with can not believe I decided not to take the medication. They said "you see what these woman go through who have breast cancer". I said "yes but, I also have to be able to live my life". You have to weigh all your options and then make the best decision for you. Hugs
Thank you. I really think it’s one of the hardest things because it’s such a long commitment and there are a lot of possible side effects. Because I already had low grade invasive ductal carcinoma that was hormone driven, I’m sure it will be recommended that I try them.