Newly Diagnosed Pagets Disease

Well, there seems to be a lot more of us than first thought, but still not much information available to us by the "specialists". I have just finished my radiation treatment, which was a horrible time, treated like a piece of meat from the get go and then last week (a week after my last zap) my skin that was hit by all the radiation broke down and I ended up with 2nd to 3rd degree burns and did not (was not) informed on how to care for it.  I ended up in the ER of our local hospital and even they didn't know how to treat radiation caused burns... grrrrr, so I had to have another week off work and basically sat around with no top on and bathed my poor wounds in salt water baths and applied lots of Lucas's paw paw cream.  The Genesis "Care" Centre (and I use the word care very loosely here) got in touch with me on the first day of leave to see if I needed help, really???? you think! told the nurse that I was not travelling half an hour up to her for treatment as there was NO way in hell I was going to attempt to put a bra on.  I finally managed to get to the Centre on the following Monday and mentioned to the nurse that I wasn't impressed with their "care", she apologised (too damn late) and related to me that I should have gone home armed with certain bandages etc to help heal the skin if it started to break down.. once again too damn late and nothing was given to me.  She proceeded to bathe my poor sad and sore boob and then applied the "correct" bandaging, and sent me home with more so that I could change when necessary.  Once again, there isn't enough information out there for people who present with burns like this, and being a large breasted woman it apparently does take longer for the burns to come through, stupid nursing staff should have known all this.  Anyway, this has not been a "pleasant" journey, and I hope I don't have to have any further treatment, but as you both know, there is nothing out there than can actually detect any further "flare ups" for Paget's or DCIS's, so what do we do, how do we try and live "normal" lives with the knowledge that this thing is basically undectable.  I have heard of a MRI machine in the United States that is purely for detection of breast cancers of all forms, wish we could get one here! 

To you both, I hope your journey improves, and Desley, fingers crossed that your forthcoming MRI is all clear! xxx 

Ev 

xx