After finding a lump in the summer of 2013, I went for my first mammogram and ultrasound in September of that year. Since the results were handed to me and everything looked fine, I didn’t follow up with any doctor. By February of 2014, the lump had grown to 3 cm and was visible from the outside. I went to a breast specialist who was pretty sure it would be nothing but who did a core needle biopsy for “peace of mind”. The pathology results mentioned atypical hyperplasia but were inconclusive and further testing was recommended. Further testing (immunohistochemistry) results were inconclusive as well and pathology suggested a lumpectomy.
My surgeon went for a cuandrantectomy to get clear margins and avoid re excision in case the results were positive. Well, results were inconclusive again and back to further testing. On April 21th 2014, I got the diagnosis of DCIS, a day after my 37th birthday. It was low grade, multifocal, multicentric micropapillary DCIS without necrosis and the margins were not clear. My Van Nuys score was 9. I had no history of breast cancer in my family.
Options were discussed with my team. Re-excision, necessary because of the margins not being clear and the DCIS being present in different spots, wasn’t really an option because I have very small breasts and there wasn’t much left to work with. I was also not sure about 6 weeks for radiation and 5 years of Tamoxifen at age 37. As others have already stated, you get one chance at radiation, and I would rather keep it for later in case it should be necessary. So, mastectomy was the way to go for me.
I went for a double mastectomy with immediate reconstruction. More DCIS was found in 2 other spots during the surgery. The decision to remove my healthy breast as well may seem very radical for just having “a bit of precancer” in one breast. It was based on: having very small breast and reconstructing only the right one would have left me lopsided. I never minded having double AAs but very small AND lopsided was not an option at age 37.
Since I have very dense breasts, the lump was missed in the mammo and the ultrasound, even if it was visible from the outside already. I also had cysts, fibroadenoma and a bunch of benign things going on in my left breast, which would have bought me a biopsy every time something looked remotely fishy. Surveillance would have been every 3 to 6 months and after being left in a limbo for three months before getting my diagnosis, I was not ready to repeat that experience every 6 months.
I am three months out of surgery, very happy with the cosmetic outcome and hoping that this is the last of it.