Most people with Paget’s disease of the breast are misdiagnosed — not because doctors don’t care, but because the disease is rare and closely resembles eczema. In many cases, the only definitive way to diagnose Paget’s disease is through a nipple biopsy.
More than 80–90% of people with Paget’s disease also have another form of breast cancer, most often ductal carcinoma in situ (DCIS) in the milk ducts. I learned this firsthand.
When the pathology came back after my mastectomy, I found out that I also had DCIS — cancer in my milk ducts.
The average age of diagnosis for Paget’s disease is usually post-menopausal, in the late 50s.
I was 34 when my symptoms began and 36 when I was finally diagnosed.
Two years before my diagnosis, I started experiencing a burning sensation in my breasts. One of my nipples became inverted and started to look flat. I also noticed white material in the nipple that resembled dried breast milk.
I had no lumps or masses.
I went to my OB-GYN and insisted on being tested for cancer. My doctor ordered genetic testing, which was normal, and sent me for a mammogram and ultrasound.
All results were normal.
Not once — but two years in a row.
I was told the burning sensation and nipple inversion were probably related to hormones or breastfeeding my three kids.
Over time, my symptoms changed.
The nipple began to look raw. It started to leak blood and yellow discharge. The skin became darker, more sensitive to touch, and painful to wear a bra.
Paget’s disease was never mentioned by my OB-GYN.
Eventually, I saw a dermatologist, who immediately sent me to a breast surgeon for a biopsy.
The breast surgeon ordered an MRI with contrast, which was also normal — and then performed a nipple biopsy.
That biopsy finally showed the answer:
Paget’s disease of the breast.
I chose to have a double mastectomy. Because of Paget’s disease, my nipple and areola had to be removed.
After surgery, pathology revealed what imaging never showed:
I also had DCIS (ductal carcinoma in situ).
This is common with Paget’s disease — and it’s one of the reasons biopsy matters when symptoms persist.
I’m sharing my story to raise awareness.
If you notice changes in your breast, areola, or nipple — especially symptoms that persist, return, or worsen — please see a doctor and keep asking questions.
If something doesn’t feel right, trust yourself.
If you need support, photos, or want to ask questions, you can message me on Instagram:
@zandra303
My experience is not unique.
I am one of four Paget’s disease survivors featured on Learn Look Locate whose symptoms were initially dismissed as eczema or a benign skin condition.
Laura, Alisha, Judi, and I were all reassured. We were all treated for skin issues. And we were all diagnosed only after persistent advocacy.
Different women.
Different timelines.
The same pattern.
Persistent nipple symptoms deserve evaluation — not dismissal.
Learn Look Locate created a side-by-side comparison chart showing Paget’s disease vs. eczema to help people recognize when symptoms are not “just skin-deep.”
The chart highlights:
Understanding Paget’s Disease of the Breast
Medically reviewed by Dr. Yara Robertson, Breast Surgical Oncologist
Q1. Is Paget’s disease of the breast always associated with underlying cancer?
A: Not always, but in 80–90% of cases, Paget’s disease is associated with DCIS or invasive breast cancer.
Q2: Can Paget’s disease be missed on imaging?
A: Yes. Mammograms, ultrasounds, and even MRIs can appear normal, especially when no mass is present.
Q3. Do symptoms come and go?
A: Yes. Symptoms may temporarily improve, then return — which often leads to misdiagnosis as eczema.
Q4. Do I need a biopsy if my nipple symptoms won’t go away?
A: Often, yes. Persistent nipple symptoms should be biopsied, even when imaging is normal.
Q5. Can a biopsy be done in the office?
A: In many cases, yes. Nipple or skin biopsies are often performed in an outpatient or office setting.
Q6. Should I see a dermatologist or a breast specialist?
A: A dermatologist can be a starting point. However, ongoing nipple symptoms should always be evaluated by a breast specialist.
Q7. Is Paget’s disease the same as eczema?
A: No. Paget’s disease is breast cancer affecting the nipple. Eczema is a benign skin condition.
Q8. Is Paget’s disease of the breast the same as Paget’s disease of bone?
A: No. They share a name but are completely different conditions.
I was dismissed because my symptoms didn’t fit the textbook.
I was diagnosed because I kept asking questions.
If my story helps even one person recognize the signs sooner, it matters.
Knowledge is power — and you deserve answers.
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