Diagnosed with Paget’s Disease of the Nipple and Invasive Ductal Carcinoma: My 10-Year Journey

When Something Feels Off—Listen to Your Gut

I had just received a normal mammogram a month before—but I knew something wasn’t right.

Only one side of my nipple developed cracks, itchiness, and irritation. I kept being told the same thing: “Just use this cream.” But I refused to accept that. Something inside me knew this wasn’t just a skin condition.

So, I pushed for a biopsy.

I’ll never forget the dermatologist in Jacksonville who grunted her way through the procedure, telling me I was “being an alarmist.” I looked her in the eye and said: “I’m not here for a psychological diagnosis.” I was here because I knew my body—and I wasn’t going to be dismissed.

The Diagnosis: Paget’s Disease + Invasive Ductal Carcinoma

The biopsy confirmed Paget’s disease of the nipple—a rare form of breast cancer that often mimics eczema—and a secondary tumor behind the nipple: Invasive Ductal Carcinoma (IDC).

One of the key reasons doctors so often misdiagnose or overlook Paget’s disease is that this type of cancer doesn’t always appear on imaging. In fact, it can be especially deceptive. For example, my mammogram showed nothing. However, the cancer was still there—silently hiding behind my nipple.

My Treatment Plan: Lumpectomy and Radiation

I was diagnosed in July and had completed treatment by October 31. My plan included:

• Lumpectomy to remove the tumor
• Six weeks of radiation therapy
• No tamoxifen (as my specific pathology and risk did not require hormone therapy)

My lymph nodes were clear. One was removed because it appeared swollen on imaging, but thankfully, the swelling was caused by the lumpectomy—not cancer.

This July marks 10 years cancer-free.

What I Want Others to Know

Paget’s disease of the nipple is rare, underrecognized, and easily misdiagnosed—especially when imaging looks normal. That’s why self-advocacy is everything.

If you notice any itching, scaling, or changes in your nipple on one side, don’t wait. Ask questions. Push for testing. Trust yourself. You know your body better than anyone else.

Learn More About Paget’s Disease and Related Conditions:

• • Understanding Paget’s Disease of the Breast
  • Invasive Ductal Carcinoma Explained
  • Breast Cancer Detection When Imaging Fails

A Message from Learn Look Locate

At Learn Look Locate, we believe your voice is one of the most powerful tools in breast cancer detection. Not all cancers show up on mammograms, and not all symptoms are visible to the eye of a provider.

This story is a critical reminder that Paget’s disease of the nipple can be missed—but with self-awareness and advocacy, lives can be saved.

If you or someone you love is experiencing unexplained nipple changes, don’t hesitate. Speak up. Ask for more. Trust your gut.

We’re here to help guide, educate, and support you—every step of the way.