Patient story: LaToya’s journey with stage 3C triple-negative breast cancer

It must have been a mistake.

That was my first thought when I read the biopsy report telling me I had stage 3C triple-negative breast cancer. But there was no mislabeled specimen, no clerical error in her chart. The report told the alarming truth: at just 36 years old, I had cancer.

I was no stranger to the healthcare world. A physician’s assistant for 14 years, I had spent nearly a decade working in emergency medicine in DC. As the mother of three young children (including one who was still breastfeeding), I had also spent a fair bit of time in doctor’s offices as a patient and caregiver in the last few years.

The diagnosis was totally new territory, however. From the beginning, I had to fight for my care.

It started when I found a lump in my breast. My gynecologist was reluctant to order a mammogram—the lump hadn’t shown up in a well-woman exam just a few weeks prior, and mammograms are not routinely offered to women under 40. But I held firm, and got my mammogram.

After an initial misdiagnosis, a senior radiologist reviewed my results and requested a biopsy.

Logging on to my patient portal, I was speechless—there was my name and date of birth, but this diagnosis couldn’t be mine.

Stunned, I left work and drove home. My husband happened to be home that day, and before I even opened the car door, he knew something was very, very wrong.

From the beginning, I took charge of my treatment, seeking 2nd and 3rd opinions and researching the latest breakthroughs. I was fortunate: The FDA had approved the immunotherapy drug for the treatment of triple-negative breast cancer on the exact day of my diagnosis.

I broached the subject with my doctor, but he dismissed me. When asked why he had not suggested the new drug from the start, he said that it was not a part of the established treatment protocol, and he would not give it to me. I thought to myself, “I can’t trust this man.” I never went back.

From the start, I knew that clinical trials were an option. I had researched them for patients with pancreatic cancer during my training, and was interested in pursuing the latest and greatest that medicine could offer me. The next oncologist I went to was on the same page, and within two weeks of the disastrous conversation with my first doctor I was enrolled in a clinical trial for a new immunotherapy drug. With a new oncologist and surgeons that I truly trusted, I found a care team that understood that I needed everything, including the kitchen sink, thrown at this disease.

Treatment was tough. It involved radiation therapy, 16 rounds of chemotherapy, a radical bilateral mastectomy, and the removal of 26 lymph nodes.

I spoke up when I was deemed “too young” for a mammogram, and throughout the process when I felt like I was not receiving the best care available. Today, I’m grateful to say that I am a breast cancer survivor.

That doesn’t mean the breast cancer experience is over, however. I’m always in recovery phase, and live with the physical, emotional, and mental changes that come with a cancer diagnosis. The ordeal changed every facet of my life, from how I communicate as a clinician to my new role as a patient advocate. I tap into my expertise as both a healthcare provider and my experiences as a patient to help others advocate for themselves.

The experience also changed my appreciation of the little things in life. Feeling the sun on my face and taking my kids for ice cream on Friday afternoons has taken on new significance. My oldest daughter recently celebrated her 11th birthday. I was thankful to be able to watch her blow out her candles, and am looking forward to many more birthdays.

 

In our experience…