Yes, I had Paget’s disease. I was diagnosed in September 2018. At least it meant that the cancer was diagnosed at stage 1. The consultant and my GP couldn’t feel any lumps, so because I noticed a change in my nipple, I was given a mammogram just to be on the safe side.... I know that not all people with Paget’s disease have a lump. Did you have one? My cancer was her2 positive, er + and pr+, so I’m having hormone therapy, I had chemotherapy and herceptin, radiotherapy and I’m taking a new drug, neratinib for a year (9 cycles in) to be on the safe side (hopefully).
I did see a plastic surgeon before lockdown, but everything has ground to a halt at the moment. I’m hoping for some reconstruction , but I know it’s difficult to do.
Hi Sarah111, I hope you are done with your treatment. I am the same as you. Pagets, Her2 positive and er +. Ive only had surgery so far but really want to know if they will want me to have chemo. My invasive ductal carcinoma was only 2mm so I am wondering if that will make a difference to chemo or not. Can I ask how big your underlying tumor was and the reasoning for giving you chemo. Thanks.
