Hi, I was finally diagnosed with Paget’s disease on 7th October after 18 months of being treated for eczema & dermatitis. I had mammogram & ultrasound which were both clear but biopsy confirmed Paget’s. I had WLE on 16th October & am recovering well physically. Mentally I’m not coping so well. I went back to clinic on Monday to have my dressing removed & get results & I thought to find out next steps. I’m now as much in the dark as I was on day one. I was just told that I’m healing well & that they removed everything & that was it. Consultant said it’ll be discussed at meeting on Thursday & I’ll only hear from them if it’s decided I need further treatment if not back for yearly mammograms. This didn’t show up on my mammogram so that doesn’t fill me with confidence. I was given no pathology so I have no idea what was actually found in the tissue they removed & was literally in & out within 15 mins. Felt so rushed & was initially so happy they’d removed it all that by the time I wanted to ask questions Dr & breast nurse had both left. Should be over the moon that they removed it but I’m just an emotional wreck at the moment & really confused. I have no idea if I’m likely to need radiotherapy or not. I was offered no advice on any reconstruction available & at the moment I can’t even look at myself in the mirror. It looks so awful. I feel like I can’t deal with it because I have no idea what I’m dealing with. Will they phone me if I need more treatment or am I going to be waiting for a letter? Is it usual to need radiotherapy after WLE for Paget’s? Dr just shrugged when I asked him this.
Hopefully there’s somebody on here who has been through similar & can offer me some advice.
Hi
I personally know very little on Paget's disease, but here's a link to the information from Macmillan. Click on each link below to get more information. I hope this helps a little. One very good thing is that they got clear margins for you and you don't need to go back for a further operation to remove any more.
I found with my oncologist that he didn't seem to think it was important to tell me anything except what was going to happen. Some of them don't seem to understand the impact of a cancer diagnosis and that to 'get back in control' of what has happened when our bodies have let us down and given us cancer that we NEED to know. Mine was just obnoxious tbh and my BC nurse was just useless. So much so, that a year later, I paid £50 for my records to be copied by the hospital to get my own pathology results.
I think knowing the results helped me emotionally but made no difference to my treatment plan and I take confidence in the fact that there is a team reviewing the results and even though some don't think we 'matter' they do actually deal with these decisions day in and day out. I had my last meeting with my BC nurse and asked about reconstruction as it had never been mentioned by anyone and she just said "well you can one day if you want to" and that was that. I had over 80mm removed from my left breast and was told initially "you might have a bit of a dent" - understatement of the year! It's not a bit of a dent, it's a huge chunk and because of it my nipple is stretched and pointing to the left. I'm now 2.5 years down the line and after spending over a year with severe pain in my breast whenever I lifted anything heavy, I can now not worry about how it looks for the sake that I don't want to put myself through any more surgery than necessary. In a bra, it doesn't look any different - because it was from the left side, so I look 'normal' in my clothes and I'm comfortable with that now. Perhaps give yourself time to come to terms with the shock? October is very, very early days and you still are recovering and your breast will still need to settle into its 'new shape'. What I was surprised about was the time it does take to recover - the year post radiotherapy before it stopped hurting and the BC nurse on my final appointment actually said "it is very early days" which was 6 months post op. She might have been useless, but she was correct in this. Considering a broken bone heals in 6-8 weeks, it seems that a breast operation is pretty major for our bodies to cope with.
I hope this helps a little and hopefully someone else who's had Paget's can assist.
Kindest wishes,
