Atypical ductal hyperplasia (ADH): What questions to ask the surgeon?

hamilton1945, First, good luck on this journey. Research everything you can and keep an open mind that 2nd opinions can be extremely valuable. I have DCIS which is a bit worse than ADH. The plan I started out with has completely changed and it only began mid May. You do need to pay great attention to the details of your pathology if you have a biopsy, as that will change your plan of treatment. Do as much research as you can and don’t be afraid to question things. Find an oncologist you feel good about because it’s likely going to be a long term relationship. It’s easy to get overwhelmed and anxious. I did. Pace yourself, give yourself time to make decisions.

I have dense breast tissue as well. I was diagnosed with cancer in November and they found another spot with an MRI that ended up being ADH. I guess the positive news is that they didn’t find any cancer with my biopsy or yours. They surgically removed my ADH when they removed the cancer and were able to do a full diagnostic biopsy on the ADH. No cancer in it. It’s not easy to stay positive when you are waiting on more results. Quite hard in fact, there is so much bad literature and bad answers out there. Hope for the best and that they can get you taken care of quickly so you can get your answers soon. I’ll be thinking of you.

Thank you so much! The unknown is crushing. Each morning I wake think it was a bad dream and then the reality sets in. I go from crying, to sadness, and it will be okay. It all sorts of order. I am just trying to keep it all together. I am so glad that your biopsy was clear and the cancer was removed!! Best wishes to you also!! Thank you for your support! I will keep you posted. Take care!

Thank you for your support. I am coming a better advocate for myself and I bringing my husband with me to all appointments. The unknown is so hard. Thank you for the support it me alot!! Best wishes!

I used the question list from the American Cancer Society to help me create the questions I wanted to ask, link below.

Specific to adh, you might want to ask if they tested for estrogen receptor positive (not typically tested, but may be) or do they suspect it is estrogen positive, Do they have a designation for the type of cells, monomorphic? Or does the pathology done on the biopsy show they found cells growing in a specific pattern, link cribriform (like swiss cheese) or papillary (like palm fronds)? Did they test for Ki-67 or myoepithelial cells - on mine that was the determination that the cells were contained inside the duct. Generally they don’t test for mitotic rate because adh is by definition slow growing, but some detailed pathologists will note that they tested it anyway.

By putting together a good list of questions, I felt a little more sense of control as I felt I would be better prepared for what they were suggesting as the next step. It also filled that awful waiting time!

I created an “If this, Than that” sorting my questions into groups based on what might be discussed.
For example, they might suggest surgery - I had a list of questions based on what I’d read were possibilities:
If lumpectomy surgery, then what?
If breast conserving surgery (which might include some rearrangement of tissue to mask the area of removed adh) then questions about that.
If surgery, when would they review the pathology report with you. This may determine another set of questions - but you probably don’t need these now.

If no surgery, then what?
If hormone therapy, then questions about that.
If monitoring only, then what does that look like?

Best wishes with your upcoming appointment!
https://www.cancer.org/cancer/types/breast-cancer/understanding-a-breast-cancer-diagnosis/questions-to-ask-your-doctor-about-breast-cancer.html

Thank so much! This is so helpful! Sometimes I am afraid to research too much because it can be so overwhelming and scary. The website you gave is incredibly hepful. Thank you!!

@hamilton1945, how was the consult with the surgeon? What are next steps for you and how are you holding up?

Hello. Thank you for checking in. I have moved forward with the lumpectomy. Thank you!!

Question everything thoroughly especially about imaging, plan flow charts and biopsy results. Leave no stone unturned down to the linguistics of their plan of choice. They seem to cover their asses with a lot of false fluff. Some of these cancer centers need excised from the system more than the issue of cancer from the body. Beware they milk the system for easy insurance money.
My fiancée has a unilateral lobular ductile 1.7cm mass categorized benign on imaging and suspicious for neoplasm post biopsy. She is in advanced CHF and the first surgeon copped out after flow charting a plan initially due to the advanced CHF. Her second surgeon put her on Anastrole and retired. The surgeon who took over her case is totally too aggressive wanting to do a partial mastectomy and biopsy of her axial lymphnodes. Needless to say we are searching for our third cancer institution within a year and none in sight. We feel so hopeless down the shore in NJ: Sloan Kettering and Temple Fox Chase have been utterly useless.