At 34, I was told I had two kinds of breast cancer: DCIS, which many people know about, and Paget’s-disease of the breast, which hardly anyone talks about. It took two years to get that diagnosis. Two years of being dismissed. Of being told it was just a rash. Of constantly wondering why it wouldn’t go away. What I really want to say is this: if something feels wrong—keep pushing. I did. And it saved my life.
I was 32 when I first noticed something wasn’t right. My nipple was crusting and oozing, and it just wouldn’t heal. I went to a dermatologist, who took a skin biopsy and a swab. The diagnosis? A rare skin infection from a gut bacteria called Finegoldia magna. I was given topical steroids and antibiotics. But nothing worked. It kept coming back. Eventually, the oozing got so bad I had to keep my nipple covered all the time. I just knew—this wasn’t normal.
While all of this was happening, I also found a lump in my breast. I had mammograms. I had ultrasounds. But they all came back saying I had fibrocystic breast changes and microcalcifications. I was 33 years old. I still didn’t have answers.
In December 2016, I went back to my OB/GYN. I couldn’t take it anymore. I was then referred to a general surgeon who performed an excisional biopsy of the areola. That led to a whole set of tests: a mammogram, an ultrasound, and finally a breast MRI with contrast. That last test is the one that changed everything.
In January 2017, I was sitting at work when I got the call: “You have Paget’s disease of the breast. Stage 0. It’s rare. You’ll need a mastectomy.” And just minutes later, I got a second call: “Actually… we’re not sure. There may be something else. We need to do more testing.” At that point, I didn’t want maybes. I didn’t want guesses. I wanted clarity. And I wanted control.
I decided to refer myself to the Brown Cancer Center in Louisville, KY. That’s where I met Dr. Ajkay, a surgical oncologist who reviewed everything I’d already been through—all the tests, the pathology, the history—and finally confirmed: I had Paget’s disease of the breast, and I also had DCIS.
On March 1, 2017, I had a radical mastectomy with one lymph node removed and a tissue expander placed. My pathology came back ER-, PR-, HER2+, with high-grade DCIS. The best news? Clear margins. That meant I didn’t need chemo or radiation. But recovery was tough. Expander fills were the worst part—I won’t sugarcoat it.
In July 2017, I had my first reconstruction surgery. I had a tissue expander swap, a capsulectomy, and MENTOR® MemoryGel® implants placed—800cc on the left (mastectomy side) and 375cc on the right with a lift to match. Then in October 2017, I had fat grafting using liposuction from my stomach. Because I had no fat or skin left, they had to use AlloDerm during my earlier reconstruction just to support the implant. This last step helped smooth out the areas that felt hollow and unfinished.
I’m doing well. I see my oncologist, Dr. Mounicka Mandadi, regularly and get a mammogram and breast MRI every six months. I also check my remaining nipple every single day. Because now I know—this disease can hide in plain sight.
Paget’s disease of the breast is so easy to miss. It looks like eczema. It acts like a rash. It doesn’t show up on regular mammograms or ultrasounds. But it’s almost always connected to another cancer underneath—just like mine. Symptoms can include: itching, burning, or tingling of the nipple or areola; flaking or crusting of the skin; yellow or bloody discharge; flattened nipple. If something like this won’t go away, ask for a breast MRI with contrast. Push for answers. Your life could depend on it.
A Message from Learn Look Locate Laura’s story is a powerful reminder that not all breast cancers are the same—and not all symptoms are obvious. Paget’s disease of the breast is rare, but it’s real. And Laura’s voice is helping to unmask what is so often mistaken for something harmless. Her courage to speak up may help save another life. At Learn Look Locate, we believe that every story matters—and that your voice can light the way for someone else. If you’ve walked through a diagnosis, treatment, or even uncertainty—we invite you to share your story. Whether you’re newly diagnosed, in treatment, or years into survivorship, your experience has the power to educate, support, and connect us all.
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