Patient Comments: Paget's Disease of The Nipple - Symptoms

What were your symptoms of Paget's disease of the nipple?

Comment from: 45 year old female, 45-54 Female (Patient) Published: September 08

About a year ago, I mentioned to my doctor that I was having some sensitivity on my nipple and a small sore spot. It seemed to get better on it's own with Neosporin so I didn't think much more of it until a few months ago I noticed a few drops of blood on my nightgown. This then rapidly progressed to severe itching & burning. The surgeon I was referred to initially treated it as a possible fungal infection and then did a biopsy. I have DCIS and am facing a mastectomy in the next few weeks. My mammograms have always been normal (but I have dense breasts which apparently can make this difficult to diagnose initially).

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Comment from: lilly, 19-24 Female (Patient) Published: May 19

I'm only 19 and I'm really scared because after googling Paget's disease I'm seeing a correlation with the symptoms that seem to be appearing. Both my nipples itch and burn especially late at night and I have a breast lump.

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Comment from: dee, 45-54 Female (Patient) Published: May 16

I had ulceration on my nipple, but assumed it was chafing from my running bra, so I ignored it. It returned three months later, so I searched the symptoms and actually saw Paget's. I had just booked and paid for a “bucket list” trip to Africa to climb Kilimanjaro. So I thought, "I can't deal with this right now," put a bandage on it, and off I went. I thought, if I just climbed to the roof of Africa I can't be sick. So I came home and ignored it for the third time and then caught a glance of my nipple in the mirror and saw it was changing not only the nipple, but the areola area. I have no risk factors, no history of cancer in my family. I have never smoked, don't drink, I'm thin, and have always exercised a lot. I was just diagnosed with Paget's and need a mastectomy. The pathology report just came back today, but there is no staging yet. I set up my first oncologist appointment. I hope it is not too late for me and it isn't in an advanced stage. I hope I didn't throw my life away at 53. I am the perfect example of someone who ignored symptoms and will be the first to admit it is all my fault. I hope someone reads this and it spurs them to see a doctor quickly.

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Comment from: Carol, 55-64 Female (Patient) Published: October 24

I has a small amount of crusting on my left nipple in Oct of 2010--I used an ointment on the crusting and it disappeared. In March of 2011 I noticed a small spot of crusting on the same nipple...Within a couple of days I received an email from a friend mentioning "Paget's of the breast." I was seen by an oncologist whom did not think it was Paget's but did a biopsy anyway...Within 2 days I received the results--I had Paget's. An MRI confirmed a tumor in the milk duct.

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Comment from: 65-74 Female (Patient) Published: March 22

I noticed a tiny absolutely white spot on my nipple. In the next month there was some crusting over that spot. My gynecologist suspected Paget's but the surgeon he sent me to for a biopsy laughed at me and told me to go home and "try more creams." He believed that it was a fungus. For more than a year the lesion persisted and grew (but only incrementally -- it remained a small section of the nipple). There was rarely pain, more often intermittent itching. The gynecologist who replaced my doctor when he moved away would not even look at it -- there was already a report from a surgeon in my file saying that it was nothing. Seventeen months after I first noticed the change on my breast, I went to a new family doctor, a woman. She took one look and said that if it were on her breast she would get a biopsy immediately. I told her that was all I wanted -- just to know. She made an appointment that day. I had surgery three months later (Houston flooded and lost some medical labs) but eventually M. D. Anderson diagnosed the tissue. We did a deepish cone shaped lumpectomy and removed 11 lymph nodes from the armpit. The lymph nodes were clear. The follow-up was aggressive radiation -- because I had had the cancer for so long. There was no underlying breast cancer which I realize was amazing. I have been cancer free for nearly ten years now and am a very healthy 70 year old.

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Comment from: NJPOZNANSKI, 25-34 Female (Patient) Published: May 09

I have a gray scab like spot next to the areola. It also itches.

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Paget Disease of the Breast - Treatment Question: What was the treatment for your Paget disease of the breast?
Paget Disease of the Breast - Experience Question: Please describe your experience with 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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