Hi. I had a high grade DCIS left breast mid November 2014 and had 2 wide excisions. I had a margin of 3 mm but my surgeon preferred a 10mm clearance. The size of my DCIS was not picked up on mammogram or ultrasound and had 35 mm of tissue excised. The treatment plan was wide excisions and radiotherapy. however rather than having a third excision I opted for a skin saving mastectomy (SSM) mid January and will be having DIEP this Friday. The pathology post mastectomy showed nil cancer and the sentinel node was benign. I do not have to have any radiotherapy.
I am happy with my decision to have a mastectomy after much consideration and family support. But like you I initially wanted a double mastectomy and if I had the opportunity to have an immediate reconstruction I would have proceeded. However I was unable to have an immediate reconstruction as my breast surgeon wanted to operate asap. I have a large expander and the expander was filled with fluid equal to the weight of the breast tissue removed at the time of surgery.
Now I am glad I only had the single mastectomy. Yes, I do worry I may get breast cancer in the Contralateral breast but I have a 90% chance that I will NOT get it.Louise Turner blogs are fantastic, supportive and informative and talks of the underestimation of grieving process for loss of breasts.
My plastic surgeon was glad I did not have radiotherapy as it thickens the skin. Another reason I did not chose radiotherapy was because it was my left breast and the proximity of my heart. Also the need to go 5 days a week for 6 weeks was another consideration.
Having a mastectomy is a very personal choice that can only made by yourself.
My surgeon did not say whether it was estrogen receptive but as she was a very thorough and highly regarded surgeon I assumed it was not a precursor to my DCIS.
I wish you all the best on your journey.