I am feeling frustrated. My doctors don’t communicate well so I carry around a three-ring binder with all my tests and notes. I have early-stage invasive ductal cancer but there are aspects that have grey areas so decisions about what to do have not been clear. I’ve had to do a lot of research on my own and be my own advocate, which is exhausting.

I have 1B cancer on left with no nodes involved; there was 7 different spots of tiny cancer, and I was told that I needed to have a mastectomy on left because of the amount. I have 1B with 1 node with a micrometastases on the right. ER/PR+ Her2-.

I opted for a double mastectomy, and they took out 4 nodes on each side; surgeon didn't get clear margins on the left, so I just had a second surgery (that I had to insist on vs. her wanting me to just do radiation to clean it up) and there was a spec of cancer removed. Got negative margins. Oncotype on left was 0 and 12 on right- no chemo.

I've been to 3 different radiation oncologists. Two stated I absolutely need radiation because of lymph node involvement (micro cancer that was taken out). Both said I would be radiated from collar bone to hip on right and entire chest wall on left; however, one said 5 weeks and one said 6 ½ weeks. I felt like I was getting bullied into radiation by both of them and my surgeon. I finally went to a 3rd Radiation Oncologist at Moffitt who gave me pros and cons and didn’t make it sound like skipping would be a death sentence. I'm considering not doing radiation. I'm supposed to start Tamoxifen now. I think I’m okay with doing that but worry about side effects.