Paget's disease

Hi Liz4 My name is Kylie and I'm 38yrs old. Just over 6wks ago I was 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. The last 6 weeks has been constant appointments and tests ie: ultrasounds, MRI's, biopsy of the lymph glands, full body & bone scans plus the removal of my R nipple and half the breast tissue. The original ultrasound and MRI only picked up possible imaging of the Paget's and missed the DCIS completely. Really the only thing I can advise is trust your "gut" feeling and really push your GP's, surgeons etc to run as many tests/ biopsies as you require to find the answers. If I hadn't pushed I wouldn't have had a dermatologist do the nipple punch biopsy. As I was still breast feeding it only took me 6 days from Paget's diagnosis with drugs to stop the lactation process that I had both my nipple and partial mastectomy surgery which also discovered high grade DCIS. Unfortunately moving forward I can either play the wait and see game and do regular scans and check ups with all the stress and anxiety involved or seek peace of mind and remove both breasts and have a reconstruction. Hope this helps, Kylie