Pagets Disease

Hi Kylie, Firstly I just wanted to say Kylie that I am very very sorry to hear about your diagnosis and that it is  okay to be scared as I know I was when I first learnt about my Paget's disease. I was pretty angry at first that 3 doctors missed it and I don't want much television so I had never heard of it. Then when I heard of it and googled the subject it would appear that a flaky itchy nipple was something that was quite necessary to have investigated. I think I found on the internet a couple of shows that had been aired on tv - so note to oneself was immediately to watch more tv & work less :).  Anyhow I found great comfort in the support of women from this site and it meant a great deal to me. There were those nights when I lay there unable to sleep and I was very frightened.  However I placed a great deal of faith in my surgeon, she was simply wonderful and my husband and I took the journey together.  It was recommended that I have a mastectomy as I had Pagets and DCIS which was through the breast so the hope was that I would then have the lymph nodes tested to see if further treatment was required.  I worked very hard to stay positive and whilst there were times that this left my side most of the time I said well I could have been 18 or 25 or 30 & this helped me personally.  It isn't for all and it's a journey that everyone handles differently.  I had the mastectomy, the nodes were tested & yes it was a scary time waiting for the results.  I was personally terrified of the radiation. I thought I can do the chemo, I can do the hair loss, I will be sick but the terror of the radiation almost immobilised me. So I used the waiting time to focus on what I loved, my family, birdlife, nature & I read other women's stories and experiences and tried to make myself strong that way. The end result was that I didn't need the chemo or the radiation therapy. Yes I was minus a breast and I did not choose reconstructive surgery as I felt for me personally I didn't want to put myself through anymore than I had already gone through.    Pagets is quite rare and at the time I wanted to know more and more as I think I wanted to take some control back but not too long before my op I went with it. I have read but please bear in mind that I am no expert that it is quite rare to get Pagets in both breasts & this gave me some hope at the time, it does happen I have heard but it is extremely rare - a bit like Pagets itself. Please feel free to msg me anytime & I will respond pretty much straight away. Sue F was a comfort to me and I can only hope that I will be a comfort to someone else even if just as a listening post.  My thoughts are with you & your husband and your children. Hope I can help in any way. XX Kahu