Just diagnosed DCIS grade 3 after many benign biopsies
I joined here in 2017 with questions after finding out I was CHEK2 positive and a many-year (close to 20) history of nipple discharge. I had I think 3 ultrasound guided biopsies around that time and all came back benign intraductal papillomas. Although the CHEK2 put me in a higher risk category there is no breast cancer history in my family - but lots of other cancers (including two sisters, one with ovarian and one who passed away from chondrosarcoma) which was whyI had genetic testing done. My breast surgeon was content to monitor with annual mammo/ultrasound alternating with MRI every 6 months. I was ok with that although somewhat bothered by the literature suggesting papillomas should be excised because a small percentage are found to be accompanied by cancer on surgical excision. All was pretty quiet for a few years.
This September I had an MRI-guided biopsy on my right breast. Once again papilloma. But I decided to seek a 2nd opinion from Dana Farber high risk clinic about my CHEK2 status, mutliple papillomas and family cancer history to just see what another expert would do in my situation. The surgeon I consulted with was very thorough and agreed to do a review of all my imaging and biopsy results with her radiology team. She explained to me and showed me my MRI images which I hadn't seen before, and how "busy" my breasts were. She said the CHEK2 may not have anything to do with the papillomas, and that the papillomas may not increase my risk for breast cancer but they sure do make it harder to detect if you do have it.
A week or so later she called me and said there was an area of non-mass enhancement in my LEFT breast on my most recent MRI (the one from September) that she "didn't like" and she recommended a biopsy. I got that MRI-guided biopsy back at home (DF is 4.5 hrs from me) and this one hurt way worse. Which got me thinking how much more of this monitoring I want to take. And yet I was stunned when yesterday I got the call that this time the biopsy results show DCIS.
Biopsy info includes that it is nuclear grade 3, ER+, PR+ (HER not tested). Solid, cribiriform and involving paipillomas, necrosis and microcalcifications present, along with intraductal papillomas, fibrocystic changes, and sclerosing adenosis. I don't know what to ask overall but I did wonder about the signficance of the CK5/6 result on the biopsy report? It says "shows abnormal loss of staining with an atypical epithelium"
The surgeon at DF told me when I consulted with her that if anything abnormal was found on biopsy she would recommend bilateral mastectomy because both breasts are so busy and my history and CHEK2 status. I'm meeting with my surgeon here on Wednesday. While I'm relieved that it's not invasive, I'm just not processing that this is actually the case now instead of a hypothetical to probably be headed to mastectomy.
Thanks for reading and I appreciate the knowledge I'll already gained from this community.