Pagets Disease

Hi, My name is Kylie and I'm 38yrs old. I've just been diagnosed with Paget's disease of the nipple and high grade DCIS. Also suspicious lymph node showing activity. I have no breast cancer in my family history. I only found out I have the above conditions as I was having difficulty feeding our newborn baby girl as my nipple and milk supply wasn't normal. We have two other daughters aged 2 & 5 which I breastfeed successfully so my gut feeling was something was definitely wrong. I was shocked to find out via a punch biopsy by a dermatologist that I had Paget's as were my GP, lactation consultants, OBYN etc. after exhausting antibiotics, cortisone creams, natural therapies, reduced feeding on my R side over a 3 month period. This has absolutely rocked our world with our young family. So far we have done ultrasounds, MRI's, biopsy of the lymph glands, full body & bone scans plus the removal of my R nipple and half the breast. The original ultrasound and MRI only picked up imaging of the Paget's and missed the DCIS 8mm. I'm struggling to find out information about Paget's especially for my age group and what other women have done as their next step. One surgeon we have consulted highly recommends the 'wait and see' regarding possible return of DCIS on either breast (or Paget's on L) with yearly imaging check ups and 3 monthly ultrasounds on lymph whereas another surgeon strongly recommends preventative measures to avoid possible return with a dbl mastectomy and reconstruction. Any advice would be greatly appreciated. Thanks, Kylie