Paget's disease

Hi jk, That's how I feel . See surgeon on 24th march . Support is much appreciated. Lv

Hi again Liz4 All I can say is don't stop asking questions from your doctor, dermatologist or whoever, until you feel happy with what they tell you. To me, it sounds like they are giving you a real run around, which is not what you need. Hope you get some straight answers when you see the doctor in three weeks.

So good to hear that you are getting to see a surgeon. I agree that you should see whoever it takes until you get answers. Glad that you have found this site helpful, as I did too. Thanks for your update Take care Jill

Hi, Thanks for your responses. I saw the Dermatologist today . He prescribed a stronger Pred cream and wants to see me in three weeks . If there is no improvement he will do a biopsy. Having read what I have on here I went from there to the same GP who gave me a letter to the breast surgeon and explained I couldnt get in til May. Also that I had been sent to a Dermatologist , he said he will make an urgent appointment with any of the surgeons in the practice if she cant see me earlier. I will go along with all of it until I get some answers. This site has been very helpful . Liz

Hi again Liz Hope it all works out ok for you. Will keep you in my thoughts, try and keep us informed on your progress. This BCNA site is a wonderful way to get information and most importantly find support from others that have experienced the same or similar to yourself. Good luck x Jill

Thanks Jill, asked GP to get quicker appointment and he said surgeons are there to cut things out and I didnt need it. He rang and got reports from radiologist . He got me a quicker appointment with the skin specialist who diagnosed my initial AI disease. Got in next week. He said he wanted someone who knew my history so I have to start with Dermatologist. I have also made an appointment with my specialist who I trust and thats late Feb. I will keep the May one to the breast surgeon and hope one of them gets me in sooner. My daughter came here and read the info which has been a great help to both of us. Reading similiar stories with diagnosis was really helpful. Here I go again !!!! Keeping all options open after reading on here.

Hi Liz4 Just read what you have been through, my advice is go back to your GP and ask him to get you into a surgeon as quickly as possible. It maybe serious or it may not be, but it needs investigating NOW. My nipple had been tipping under and was sore and crusty, my doctor sent me for a mammo and referred me to my surgeon straight away. Nothing was picked up in the mammo nor ultrasound but my surgeon saw a distinct change between it and the last one. Next was biopsy then mastectomy. Mine apparently was hidden under the nipple and had become invasive with the potential to be aggressive. I hope it all proves to be nothing for you but you need to push for an early appointment. Good luck let us know how things go Regards Jill

Hi Liz4 Just read what you have been through, my advice is go back to your GP and ask him to get you into a surgeon as quickly as possible. It maybe serious or it may not be, but it needs investigating NOW. My nipple had been tipping under and was sore and crusty, my doctor sent me for a mammo and referred me to my surgeon straight away. Nothing was picked up in the mammo nor ultrasound but my surgeon saw a distinct change between it and the last one. Next was biopsy then mastectomy. Mine apparently was hidden under the nipple and had become invasive with the potential to be aggressive. I hope it all proves to be nothing for you but you need to push for an early appointment. Good luck let us know how things go Regards Jill

Hi, I have been to a GP who thought I had Paget's of the nipple. Both nipples have a yellow crust and are sore and inflamed, one is sometimes inverted. He sent me for mammogram and ultrasound which were all clear but he wants me to see a breast surgeon. I cant get in to see her for four months so returned to my GP who said I dont need a surgeon and is sending me to a Dermatologist. I had extensive tests in 1997 at a breast clinic where they decided not to biopsy. My problem is I suffer from a rare auto-immune disease involving skin and muscles , it also comes with a high cancer rate. Its called Dermatomyositis. I have been turned inside out looking for the tumour in the early stages of diagnosis. Have had this debilitating illness for 26 years. Reading the info on here I am looking for help. Should I see my disease specialist and ask him to send me to surgeon a bit quicker or go down the skin specialist road ? I have done all this before with a rare disease and I cant face being wrongly diagnosed or misdiagnosed again. I dont have the energy to see lots of docs and get nowhere. There is something wrong with my nipples , I know it but it was shrugged off as probably being connected with my disease. I did ask an auto-immune expert in the US and he said Pagets has nothing to do with my disease. Can anyone offer any advice on what I should do ? I am used to being my own advocate medically.

My advice is to go back to your GP and demand a referral to a breast surgeon. Make sure the breast surgeon doesn't dismiss your concerns. You may 

Request a biopsy of your nipple. The local anaesthetic will hurt like hell but it is worth it for your own peace of mind.

Kind Regards,

Liz