This is such a personal decision and you don't need to rush into that decision. Take the time you need to 'try on' various scenarios. I was first diagnosed with LCIS (Lobular) Stage 0 about four years ago. I think when we hear breast cancer it's quite a shock and very scary – no matter the stage. I had a lumpectomy of the area in my left breast and was monitored closely for two years. Two years later I had breast cancer again, this time in my right breast. It's not uncommon to have Lobular bi laterally. I think it's less common in ductal from what I've read. I had a bi lateral mastectomy at the time my second breast was affected. I am pleased with my decision to have both breasts removed because I have symmetry (no reconstruction) and I have less worry about on-going tests, chances of cancer and surgeries. My doctors gave me options but didn't question my choice because I had cancer at that point in both breasts. If I had known that the cancer was continuing to grow and was in both breasts I would certainly have the bi lateral mastectomies with the Stage 0 but there are no crystal balls and I did not. I could have avoided the stress of waiting for the lymph node details during the mastectomy. I was lucky (so far), my cancer had not spread to my lymph nodes but I was diagnosed with Stage 1 cancer that was invasive and had the chance of spread throughout my body. With earlier intervention I wouldn't have had to endure that.
I developed a bit of lymphedema with my mastectomies (with sentinel node removal and testing) and that continues to be a concern and was a significant struggle initially. During my physical therapy my very young, pretty PT doctor shared with me that she had bi lateral mastectomies when diagnosed with Stage 0, party due to her young age of cancer diagnosis and also because she had seen many women like me struggle with lymphedema from the node surgery and she wanted to avoid that at all costs. It was an eye opener for me because basically she had inside knowledge of the additional struggles that occur with node biopsy.
Doctors don't want to 'over treat' patients and you don't want to go through more than you have to. Perhaps your cancer will never come back. But, in hindsight, knowing what I now know……….I would have opted for the bi lateral mastectomies at the Stage 0 diagnosis……but I'm still here today and relatively healthy and I was lucky to catch my cancer the second time around at an early stage. Hugs to you.