Benign biopsy for Pagets - Sharing my story

Hello all,

This site has been a godsend as I have been dealing with my own breast issues and it gave me the courage to follow through with doctors and testing. For the past 8 months, I have been concerned that I have Paget's disease of the breast. Sometimes the only stories we see are of those who are diagnosed, so I wanted to share my story to give you all hope that while you MUST get any breast changes checked by a doctor, not every bump, lump, or rash is cancer!!

I am 26 years old with no known history of breast cancer in my family. One day suddenly in August of 2016, my left nipple began to hurt with a burning and stinging sensation. About a week later, the skin of the same nipple began to flake and felt drier/rougher than the other nipple. There was no crusting, discharge, or bleeding. After some googling (a bad idea, as always), I became concerned about Paget's disease of the breast and made an appointment with my GYN for September.

My GYN was not concerned about Paget's and believed it was dry skin, eczema, a fungal infection, or an allergic reaction and prescribed me a steroid/anti-fungal combo cream. (Side note: I requested an ultrasound as well, which did not show anything under the nipple but DID show an unrelated/unexpected lump about an inch from the nipple. That lump was biopsied and diagnosed as a fibroadenoma, a type of benign breast lump.) I used the prescribed cream for one week, and while it did help the nipple symptoms, they all returned and continued to come and go, sometimes for weeks and months at a time. I also changed my laundry detergent, cleaned my bras more often, began using a milder soap and deodorant, and avoided hot water exposure to the nipple in the shower. None of these changes had any positive effect on the symptoms.

In October, I saw a breast specialist for a second opinion. She was also unconcerned about Pagets and told me to wait a month to see if the symptoms went away (they did not), at which point she prescribed me an anti-fungal cream that I used for 2 weeks. Same story as the other cream: it helped the symptoms while I used it, but they all came back.

In the months following, the nipple began to itch and tingle in addition to the burning, stinging, and flaking, and the come-and-go dryness had spread to the areola. All of these symptoms were concentrated on the skin surface, but could also be felt "underneath" in the breast tissue around the nipple. I remained concerned because, even though the nipple's physical appearance was mild and not concerning to the doctors, the flaking combined with the symptoms I could feel all matched the descriptions I had read about Paget's and the creams and lotions had not helped.

So, I made a follow-up appointment with the breast specialist in February of 2017. I went to that appointment aiming to get a biopsy so I could have some peace of mind. The doctor was not very concerned but could offer no other explanation for my symptoms, so she agreed to do a biopsy. At the same appointment I had an excisional biopsy and a couple of stitches (a painless and quick procedure when numbed). A punch biopsy seems to be the standard for diagnosing Paget's, but she assured me that her biopsy sample would be deep enough to provide an accurate diagnosis yet leave a smaller scar.

One week later I was called with the pathology results: benign with "mild chronic inflammation." I have been told to use a .5-1% steroid cream for 2 weeks and to experiment with different creams if it does not go away.

I will continue to monitor my symptoms to see if they worsen, but for now I can sleep at night knowing that I took the precautions to make sure I am healthy and catch any problems early. You must advocate for yourself and not feel silly or needy asking for tests that will give you peace of mind. But PLEASE remember that some stories have happy endings. Everyone on this site is rooting for you and your health and is here to hold your hand through your fear, testing, waiting, and diagnosis, whether it is good or bad.