Newly Diagnosed Pagets Disease
Hi My name is Desley and I was diagnosed last month with Pagets Disease of the Nipple on Tuesday 17 May 2011. I had surgery on Thursday 19 May 2011. I have healed well but my emotional rollcoaster ...
Forum Discussion
I'm so sorry to hear that you too are a padget's survivor. It's amazing to hear you say that you feel that its not the real kind of breast cancer as I have struggled with this since diagnosis in May 2012. I have a really hard time with this as I have always got the feeling (any everyone kept saying it!) that because they got it early that I'm lucky and I feel that because I didn't have chemo and only had radiation that I wasn't sick enough (if you can believe that!) and it wasn't bad enough for me to be included with everyone else. I really don't know where this thinking has come from only that I guess the fact that we are so rare and that there are very few of us dealing with this particular cancer and that we don't fit anywhere in the mainstream breast cancer. My husband & family also struggle with the fact that the threat of cancer is still there. They say "Oh you HAD cancer you don't HAVE cancer." The problem with that statement is that yes I had cancer but my surgeon & oncologist have both said that I have a high risk of it returning as secondaries because it is so aggresive and I was only 36 when I was diagnosed so to me I struggle with this statement.
I am struggling at the moment as I am to have my 6 month check up with MRI and I'm really scared that it will come back. I have nothing to base this on only that it's such a shitty disease I don't believe you can ever be fully free of it no matter how many years pass... I'm also deciding on whether to have both breasts off to reduce my risk. Really not sure what to do...
Please believe that what you are feeling is totally normal and please put stock into yourself that you are allowed to feel any way you want as you can see from both our posts not sure why we feel like this but when you are diagnosed with Pagets Disease this seems to be the emotional response to it. I wish I knew why, maybe because we don't fit anywhere, maybe because we are so rare, maybe because we were diagnosed early, not sure but please believe that you are not alone and I am here if you need to talk.
Hope I have been of some help.
Sending you love & hugs.
Desley xx