Zandra’s Journey with Paget’s Disease and DCIS: A Story of Resilience and Awareness

Hi, I’m Zandra! Last October, at 36 years old and after two years of symptoms, I was diagnosed with a rare form of breast cancer called Paget’s disease. Paget’s disease of the breast accounts for approximately 1% of all breast cancers.

Navigating Diagnosis and Initial Symptoms of Paget’s Disease

Most people get misdiagnosed because Paget’s disease is so rare and resembles eczema. The only way to diagnose it is often by a nipple biopsy. More than 80%-90% of people with Paget’s disease also have another form of breast cancer, usually in the milk ducts. When my pathology came back from my mastectomy, I learned that I also had ductal carcinoma in situ (DCIS). The average age of diagnosis is usually post-menopause in the late 50s. I was 34 when symptoms began and 36 when I was diagnosed.

Recognizing Early Signs and Seeking Medical Advice

Two years before being diagnosed, I began experiencing a burning sensation in my breasts, and one of my nipples became inverted and started to look flat. I also noticed a white discharge from the nipple that resembled dried breast milk. I had no lumps or masses. I went to the OB-GYN and insisted on being tested for cancer. My doctor did genetic testing, which was normal, and sent me for a mammogram and ultrasound. All test results were normal for two years in a row. I was told that the burning sensation and nipple inversion were probably from hormones or breastfeeding my three kids.

Addressing the Escalation of Paget’s Disease Symptoms

Eventually, the affected nipple started to look raw and leak blood and yellow discharge. It became darker and more sensitive to touch. It hurt to wear bras. My OB-GYN never mentioned Paget’s disease. I went to a dermatologist who sent me to a breast surgeon for a biopsy. The breast surgeon sent me for an MRI with contrast, which was also normal, but the biopsy showed I had Paget’s disease.

Making Informed Treatment Decisions for Paget’s Disease and DCIS

I opted for a double mastectomy and needed my nipple and areola removed because of the Paget’s disease. After my double mastectomy, the pathology revealed I also had DCIS, which is ductal carcinoma in situ.

Raising Awareness and Advocating for Early Detection

I’m sharing my story to raise awareness. I urge you to please see a doctor if you notice changes in your breast, areola, or nipple. Early detection is crucial. Please message me @‌zandra303 if you have any questions or need photographs or support. Thank you for taking the time to read my story. Share this information to help others recognize the signs and seek timely medical advice.

Learn Look Locate Stands with Zandra in Her Journey

At Learn Look Locate, we are deeply inspired by Zandra’s unwavering strength and dedication to raising awareness about Paget’s disease and DCIS. Her story serves as a powerful reminder of the importance of early detection and self-advocacy. We stand in solidarity with Zandra and all the brave individuals who share their experiences to empower others navigating their own breast cancer journeys. Through our platform, we aim to provide support, information, and a sense of community for all those affected by breast cancer. Together, we can foster hope, resilience, and a brighter future for all.