Atypical Ductal Hyperplasia w/ calcifications

KarenH1225

Hi! I'm Karen, and I'm currently 5 weeks post bilateral breast reduction. This surgery has been a very long time coming, and it turns out, may have saved my life.

To my surprise and shock, pathology came back showing "focal atypical ductal hyperplasia with calcifications, and immunostain positive for cytokeratin 5/6 and cytokeratin HMW".

I'm a nurse, and had immediate access to a consult with a breast surgeon/oncologist. She basically gave me 3 options. Due to the inflammation and healing taking place, I'm unable to get a breast MRI til December, so I'm scared and finding it difficult to think of anything else.

Here are my options:

1) Surveillance. MRI's and mammograms, alternating, every 6 months (1st one in Dec)

2) Do the alternating MRI's/mammos, plus take Tamoxifen for 5 years, which will lower my chances of developing cancer by 50%.

3) Mastectomy of the left breast giving me a 99% recovery rate.

For those with the same pathology, are the above options what you were given? Any advice, past experiences or additional information about atypical ductal hyperplasia would be greatly appreciated! I'm very grateful the breast reduction found these changes, but in complete disbelief of the findings. Not what I expected...

Thanks so much

farmerlucy

Hi Karen - when an excisional biopsy showed ADH and ALH my breast surgeon sent me to a genetic counselor. The breast surgeon said he wouldn't be worried if it was just ADH, and that ALH was a marker for bilateral BC. Due to my family history of very early onset BC, along the the biopsy finding the GC gave me a 50% lifetime risk. That prompted me to have a preventive mx. Little did I know I already had BC.

Mel1969

karen, what is the significance of positive immnunostain of cytokeratine?

I recently had a sugical excision of left breast. It was a atypical papillary lesion with adh in surrounding tissue. The margin was not clean so I have to go back for re excision. My immnunostain was also positive for cytokeratine within the lesion.

KarenH1225

the way I understand it from my breast surgeon and searching cytokeratin on the internet, it’s a protein found in tumors. It’s another tool to help identify exactly what it is

VLevic

Karen,

I understand your dilemma. I started out with ALH during a routine mammo and went through stereotactic biopsy. Navigated to an oncologist who recommended Tamoxifen. I ended up doing an olive oil clinical trial. During 6th month, I did ask for breast MRI since that was told by the breast radiologist for me to do being a high risk. Lo and behold, they found some highlighted areas, got biopsied again and I have 1 invasive ductal, invasive lobular and it went to one of my lymph nodes too. Had another stereotactic and that was still ALH. My case was discussed during two tumor boards from different facilities and one recommended chemo then surgery and one surgery first then chemo. I opted doing the skin sparing mastectomy with tissue expander and axillary node dissection. Had Oncotype testing after that and have to do 4 chemo infusion. Currently doing radiation treatment. I opted for surgery because I want to get rid of it and just start on treatment. I'm 47 and my grandmother has breast cancer, 2 of my aunts and a cousin now plus me. My BRAC was negative. I'm a physical therapist and very much aware of the Lymphedema from axillary node. However, breast surgeon does not want to take a risk if she does sentinel node. I cannot tell you what to do, but in a similar case, I chose number one first and did not do drastic measure until that time came. I have read and know of women that underwent mastectomy even on a Stage 0. If you don't choose the drastic measure, then go for close monitoring. I can tell you that I have to do a lot of major decisions and browsing through this website and discussion boards helped me and at the same time, finding excellent team of oncologist, breast and plastic surgeons. Whatever decision you make, remember that it is just the beginning, more to come. It is a journey having to go through this and no pity party allowed, just moving along and continue with my daily routine. I wish you the best!

KarenH1225

Thank you so much for the information. I can’t tell you how happy I am to have found this website. Thanks for sharing your story as well. I feel like a sitting duck, as a lot can happen in a 6 month time period, as you well know. My MRI is in December because of the healing still taking place from the breast reduction, so I will spend this time educating myself. Knowledge is power! My mammogram just a few months back was normal. This has really caught me off guard!

Wishing you all the best

VLevic

You're welcome. Yes, knowledge is power and the more you know about the disease process, options and treatments, the more questions you can ask and helps you make the best decision for your treatment. Just make sure to take care of yourself, keep up with your close monitoring tests and be vigilant as well. I didn't regret any decisions that I made, in fact my oncologist was glad that I asked for breast MRI and if I was not pro-active about it, who knows if I waited one more year for the mammogram. I didn't know about the Oncotype testing until my oncologist told me about it after the surgery. I'm happy that she is updated with the current research on breast cancer and able to discussed with me studies that have happened on treatment options. Onco testing spared me from going through 6 months of chemo and just go through 3 months every 3 weeks. Hair loss was another decision I have to made and I did choose to use the cold caps. My cancer center was able to network me with other women who had breast cancer and had used cold caps and that helped me with my decision as well as gave me tips on what to do with your hair, dry ice delivery and the company to get. Anyway, you can always PM me if you need some input.

Take care!