Paget's disease

Well @Liz4, am very happy for you if that's the case (not happy for you that you have auto immune issues that give you these symptoms but that you don't have cancer). Crossing fingers for you that the cream and exfoliation helps. Please let us know how you get on. Hugs. Xx Cath

Hi, saw the new surgeon and had an ultrasound . He said he couldnt see cancer . He said he didnt think it was Pagets . The crusting is also on the other nipple and he suggested exfoliating under the shower with a face washer . Then apply the cream nursing mothers use for nipples . Otherwise my options were to have the nipple removed . He thinks its possibly due to my auto immune diseases both involve the skin . I think its going to take a while to get rid of  .  He said the surgeon who removed the milk ducts was a new surgeon .. Thanks for all your help again . 

Yes...and hopefully a solution will be found for you this time @Liz4

Ps my details are on the new referral about what went on so I am a bit stuck with it . However I have my daughter to go with so its all good .  

Sorry Zoffiel I cant work out how to comment to you individually .  I had this discussion about reports and tests etc and mine have always been sent to relevant requesting doctors who then report to me . I have been sick with AI diseases (3) and have been with one GP all these years . Specialists have come and gone . I was told by one specialist rooms they were only required to keep files for seven years .  Truly my hospital file needed its own trolley so I have been in the system . Going back to when this started I came on here as I didnt know what I was facing . I have let it go as I thought I was up against a brick wall as had been done in the past . Its been this year that it has had changes that I cant ignore .  I keep my daughter informed and she has seen it from 3 years ago to now so even though the GP's never examine me she remembers its appearance from then to now Your messages arent coming through to me ladies so I am sorry I havent answered them until now .  

Hi Zoffiel . I havent had a diagnosis but was tested for Pagets .  I have an auto immune disease which is rare and has a high tumour rate with it .  So I have been turned inside out over 30 years to make sure I don't have one .  Currently its the fact I wasnt able to get a second opinion on my breast when it all happened and the symptoms continued . I have had to make enquiries again as the appearance is worse . I dont want tests and specialists I would rather not be in this position but no one seems to have knowledge of what I was told was "suspected Pagets Disease of the Nipple ".  I hope you are right and thanks for interest . 

Thanks for responses .  I had left my name at the new breast surgeon to get a call back . They responded yesterday . The receptionist said "You have been here before and you live in ? Street " I said No I have never been there and I dont live at that place . I have lived here for 40yrs . I do know at the GP clinic who handled all this there is another patient with my name . She is also registered with my hairdresser so its always been a joke as I dont have a typical surname .  The lady had me repeat my birthdate twice and had left me on hold while she checked . I am booked in to the new guy tomorrow so I will go on from there . 

Hi liz4 have you had recent  patholgy done on crust/discharge  ......weird things like thrush can have an effect 

Good luck B

Liz, it's not clear from the posts I have seen, have you had a cancer diagnosis, breast or any other? If you have, getting into one of the specialist clinics at Peter Mac or in one of the other big hospitals may be the go. 
Getting in to see specialists for diagnostic stuff can take time. I understand you are frustrated but it might be worth getting you GP to give them a poke.

Hi Ladies ,  I have called the new surgeon four times and have left my number for a call back . So far no response .  Is there anywhere I can go in the meantime in case he doesnt get back to me ? I am in Melbourne Victoria.   I found a site where some women had bravely put pictures of their breasts and unfortunately they were all the same as mine . I got talking to one lady and found out she also had trouble breast feeding from that breast . That was in my twenties and I am now 63 . Its all wrong and I just want an opinion one way or another . Can anyone help please ?