Patient Comments: Paget Disease of the Breast - Experience

Please describe your experience with Paget disease of the breast.

Comment from: Jes, 55-64 Female (Patient) Published: May 21

I developed a breast cyst and my doctor referred me to the breast team at my local hospital. I also had a very sore and itchy nipple on the same breast. I mentioned this to the specialist at the clinic who suggested that I may need a punch biopsy but they also asked for another more senior member of their team to take a look for a second opinion. They said that they were looking for Paget's disease but stated that it wasn"t and I had nothing to be concerned about; but this judgment was made without anyone performing a biopsy, just a visual diagnosis. Seven months later I had another breast cyst and again I asked my doctor to refer me and again I mentioned that my nipple was still extremely sore. Again they felt it was nothing to be concerned about but his time gave me some cream to apply for a couple of weeks. I was asked to go back one month later to see if the cream had cleared up the sore. It hadn"t, so they eventually carried out a punch biopsy which confirmed I did have Paget's and DCIS (ductal carcinoma in situ) cancer widespread. I now have to have a full mastectomy. It"s taken ten months to get this diagnosed and treated and the anxiety of it all has made me ill. Therefore my advice to any person out here is to be persistent right from the start if you have any concerns no matter how small, it could save your life.

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Comment from: cs, 75 or over Female (Caregiver) Published: January 04

I help take care of my mom every other weekend. While helping her out of the shower I noticed one of her nipples was black. I asked her to wipe it and it came off but there was white paste like stuff behind it. I wonder if this is a sign that there was blood at one time. My mother has dementia so she can't tell me anything. I have looked for pictures of this Paget disease but all I get is diagrams.

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Comment from: Therese, 55-64 Female (Patient) Published: October 21

My experience with Paget disease of the breast was very scary. I asked the American Cancer Society to refer a volunteer who also had this type of cancer and they were unable to find another survivor. Even though they caught my cancer early I wonder what the real survival rate is. I would like to know if there are others with this rare form of cancer willing to talk about it.

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Paget's Disease of The Nipple - Symptoms Question: What were your symptoms of Paget's disease of the nipple?
Paget Disease of the Breast - Treatment Question: What was the treatment for your Paget disease of the breast?
Paget Disease of the Breast - Diagnosis Question: Please describe the events that led to a diagnosis of Paget disease of the breast.

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