I am new to this site, so hopefully this post is done right.
I went to a new doctor today as i have recently moved to a different state. I had suspected for a while there was something wrong with me but could not get anyone to really pay attention....oh you just have cysts...oh you need more vitamins,,,,etcetc. but i KNEW i didnt feel right for almost a year now and about 6 mons. i have had the crusting around my nipple and occasionally found that my bra stuck to my nipple from where it had oozed and dried. I also have had-on and off-this weird itching. its hard to explain, it didnt itch from the outside or like a scratch you could itch (altho as an aside i will tell you that i changed laundry detergents to no avail) anyhoo....the itching was weird and i could get it to go away like the inside under my skin itched and only around my breast and under my arms.
I think i am finally getting this new doctor's attention as he is actually going to do some tests and said he would investigate and give me a referral to someone else possibly. I told him I researched paget's disease after seeing the infamous email going aorund and i didnt not think i was some weirdo jumping to conclusions....could he please take me seriously. I am not a hypocondriach but i do believe we have to be aggressive about our health. So, I guess I am curious about whether anyone else that has gone thru this rare disease can talk about it, what to expect, what doctors should or may do or may not do...things i should be aware of so i can be in control and not be blown off etc. You know the typical stuff that people always want to know when they are scared and dont want to admit it, but slightly excited to finally finally find out-are you going to be the doctor that figures out what's wrong with me and doesnt just give me an "tylenol". thanks for reading and for your support. I hope i get to know you guys.
-E
FormerMember
your right it does make you feel a bit better knowing that your not going mad, and someone is finally is listening, may i suggest that you try the breat cancer forum , as you just might get a bigger audience for your question, i have breast cancer but i must admit i googled paget`s before i answered your blog, you probably have not hear of my type but then as far as i am aware there are 20 ifferent types, im guessing you are from the u.s.a? i was dx in illinois, although british, from northern ireland, my hubby works over there. good luck with finding some answers....... and.....
<p>Shatzidoc that is exactly how mine presented, the occasional bleeding and the discharge sticking to the bra, and the itching. They mistook mine for several other things - it appeared last June and I expect to have a double mastectomy next week. I am 73 and always been too big on top so that part is not such a wrench - imagine I can go braless fr the first tiime ever - but not knowing how much it has spread in this 7-8 months makes me a bit anxious, and also they have discovered that I might have some heart issues, waiting for results of angiograms. It seems to me, just from reading the blogs on this site that partials are not the best answer for Paget's as the DCIS don't always show up in scans nor are they obvious to the surgeon. There is a ten per cent chance that it will come back in the other breast and although those are good odds for the individual I don't want to worry about that nor do I want to be both floppy and flat. I am also unclear about the point when it is considered invasive.</p>
