Signs of Paget's disease or not?


I am hoping that someone might be able to give me some advice as I am feeling rather stressed right now.

Sorry this is so long :frowning:


About 2 years ago I noticed a small lump behind my left nipple. It was about the size of a petit pois (smaller than a regular pea!) and it felt round and quite hard - I could literally get hold of it. I had a mammogram and they said there was nothing to worry about. Since then it has got bigger, and my nipple is red and very sensitive. The lump now takes up the whole of my nipple (not the areola) - my nipple feels permanently hard but you cannot get hold of it - if you try to it kind of sinks into my breast. I have had another mammogram and was told still nothing. By then it was itching and quite painful from time to time. They told me it was duct ectasia because of my age. Then I had an ultrasound - the doc there said no sign of ectasia, but one small dilated duct. I don’t know if this is enough to cause what I am feeling?

Since then I have a patch of skin on the areola about 3cm and 2cm wide where the skin is peeling. Sometimes when it is really peely it bleeds in little spots.That breast has got bigger - since this started I have gone up from an F cup to a GG. Now the hospital wants to discharge me. They cannot tell me what it is or if it will go. The doc said put Nivea cream on it and the peely bit is probably an allergy as there is not enough cotton in my bra. He said the change in my breast size is because I am overweight - even though I haven’t put any extra weight on anywhere else.

I am still really worried. It is hurting more and more now - my nipple feels like someone is sticking a knitting needle in it and the skin on the peely bit feels really thin and burns.

I am scared because of all the things I have read about Paget’s disease. I don’t know if I should be worried? If it was serious wouldn’t it have escalated (or killed me) by now? The hospital are saying that the dilated duct has not changed in size over the course of my mammograms, but I KNOW what I am feeling has got bigger. The breast nurse said I can come back again if I insist but that won’t be for at least 2 months. At the moment the pain is unbearable and I am sure my worry is making it worse. I really don’t know what to do :frowning:


If anyone has any similar experience or advice I would be really grateful, thank you.

Dear emilysss

Welcome to the forum.  I’m sure you will soon have some support from fellow members.  You might also find it helpful to call our Helpline to talk things over.  They can offer practical information and emotional support.  The opening times are 9-5 on weekdays and 10-2 on Saturdays.  The number is 0808 800 6000

Very best wishes


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