Can anyone help? Pagets Disease of the Nipple??? Help!

Hi :-) can anyone who has had this, or being tested for this or a nurse please answer a question for me... could I have pagets with no rash? My nipple is red, but I think that's because I keep tugging at it. I've had this inside nipple itch before, but never this long (over a week). As far as I can tell, theres no lump, no rash, no dimpling etc..  it's red and a bit tender where I keep pulling at it.  I have been referred to the breast clinic for breast pain (this seems to have subsided a little bit now and I'm focusing more on the itch). I've seen 2 doctors. The first (about the ache they weren't itchy at this point) said its muscle pain and if I doesn't go come back... it didn't go so I went back... but the other doctor didn't look at my boobs. She just referred me. So no one has seen my nipples since they've been itchy. Do you think I should go back to the doctor and see if there is a cream or something that might help until my breast clinic appointment? I've got so many things going through my head. I don't know what to do.  Dows this sound like it could be pagets? Does it appear as just an itch and nothing else (assuming the red bits are from me tugging at it) HELP! I'm so focused on this nipple now. I was awake at 4.30am with full blown anxiety! Its consumed me so much. Thanks for reading. Xx 

  • Hi,

    sorry about all the anxiety you're going through right now! I'm 27 have similar symptoms to you except i also have a rash around the nipple too. I think its good you've been referred to the breast clinic (i also had to push for this!)

    In my opinion id avoid getting cream in between now and being seen by the breast clinic if you can manage. The only reason i say this is becasue im currently awaiting my biopsy to hopefully rule out pagets disease but my consultant had to wait a few weeks from my initial consultation to actually schedule the biopsy becasue some creams can effect the histology of the cells apparently.

    I completely understand about the anxiety though! I feel like im always looking at mine and convincing myself its getting worse! I hope you get your appointment through soon! My first appointment was within about 10 days of the referral so hopefully youll get seen quickly and they can put your mind at rest!

     

    let me know how you get on :)

     

    Stacey xx

  • Thanks for your response Stacey ♡ 

    I hope everything comes back clear for you. Did they give you any indications as to what they thought? Did you go to a one stop clinic? My appointment is for the 12th August. Feels like a lifetime away. I've had a look at images on google (I know, I know) and I can't see any really that look like mine. My nipples are slightly inverted anyway and on the pictures they are sticking out (unless pulled in by the pagets). Thank you for your advise on the cream. I'm going to see if I can get In with the doctor tomorrow and see if she'll have a look (no ones looked at it yet) and maybe see if i can have anything for my anxiety. I hope all is ok with you chick. I'll keep me fingers and toes crossed xxx

  • Not really they were typically NHS vague and said they would need to do a biopsy to rule anything out. They did say the biopsy could also tell if it was a skin problem causing the rash/itch too which i think is where the not using cream came in :) It wasnt a one stop clinic unfortunatley ( i wish it was because the waiting is the worst part!). They organised an Ultrasound for me before thet biopsy to make sure there was no mass deep in the breast which thankfully didnt show up in the scan :) 

    I did the same before my hospital appointment- i googled eczema of the nipple and suddenly ended up 100 photos in of people with pagets. Admittedly mine doesnt look exactly like pagets either but it also doesnt look like eczema so who knows! Its been there since christmas and nothings shifting it. 

    I think seeing a doctor would be helpful, at least if someone has a look it could hopefully put your mind at rest whilst waiting to be seen at the clinic. Im on medication for anxiety but it hasn't really helped if im honest but i think thats probably becasue i keep googling ha. I know its hard to do but i would so try and stay away from google because it does give the worst case scenario! I've been trying to keep my days busy to keep me away from a computer!

     

    I'm sure all your tests will come back fine but im here if youd like anyone to chat/vent too in the mean time :) xxx

  • Awwh thank you Stacey ♡ I have a feeling they will want to do a biopsy on mine to. They can't possibly know for sure without doing one could they. I don't have anything on my actual breast or the areola, its just the nipple that's red and I suppose a little bit of the areola where I'm tugging at it (at least that's what I'm telling myself) . I don't even know if my doctor will know what they are looking for as it's considered rare isn't it. I was on citalopram for a while back in 2014 which is when I had my first anxiety bout. I've luckily only had mild ones since then that I've been able to control, however when it comes to my health, my head just spirals and thinks the complete worst or everything. I hope they do and I hope yours do too. Please let me know how you get on. I wish you all the luck in the world xxx