I Was Diagnosed With Triple Negative Breast Cancer At 36 — The Signs To Look Out For
What you need to know to be you own best advocate.
Courtesy Of Author As a physician assistant with over a decade of experience on the frontlines of healthcare, I considered myself knowledgeable about breast cancer. I knew that breast cancer is typically diagnosed in middle-aged and older women. I knew that between ages 40 and 45, it’s recommended that women start getting annual mammograms. I was more informed than the average person, yet the Stage 3C triple-negative breast cancer (TNBC) diagnosis I received at 36 years old hit me like a punch in the face.
I’ve learned a lot since then, about the signs to look out for, the importance of self-advocacy, and the need for tailored resources and support for people living with advanced and metastatic breast cancer (MBC).
There’s a significant gap between what most women know about breast cancer and what they need to know to be their own best advocate.
TNBC is different from other types of breast cancer. It’s more commonly diagnosed in women younger than 40 compared to other subtypes and twice as common in Black women compared to white women. It’s considered an “aggressive” cancer because it tends to grow and spread faster than other subtypes.
Through my physician assistant education, I was taught that mammograms aren’t needed until age 40. But with an aggressive form of cancer like TNBC, where Black women are dying at a much higher rate than any other group of women, we need to be screened earlier. Had I waited to have a mammogram, I might not have made it to my 40th birthday. I am proof that early detection can save lives.
Don’t be afraid to push for the care you deserve. Seek second opinions, ask questions, and educate yourself about your condition.
When I was diagnosed, I had just stopped breastfeeding my youngest daughter when I felt a lump in my left breast. At the time, I didn’t think much of it because I knew that weaning can cause lumpy breasts and most lumps are not cancerous. A few weeks later I still felt the lump, so I scheduled a virtual appointment. My doctor ordered a mammogram, and breast ultrasound and ultimately, conducted a biopsy.
The need for self-advocacy — especially among Black women — first became apparent when I had to insist on receiving the diagnostic tests that my doctor had ordered because they looked at my age and said, “You don’t need a mammogram. You’re too young for this. You just need an ultrasound.” But, I knew what my doctor had ordered and was able to push to get the diagnostics I needed.
Then, during the mid-portion of my adjuvant chemotherapy, I found out about a new immunotherapy for TNBC. When I asked my oncologist why I wasn’t receiving it, I didn’t get a good answer. He never welcomed a discussion about the treatment or my interest in participating in a clinical trial.
After that, I made a complaint, spoke to his chief, and got another oncologist. Eventually, I was able to gain access to the treatment through participation in a clinical trial, and, along with my post-adjuvant chemo, I responded well. Because of my persistence, I’m able to sit here today and encourage other women to advocate for their own treatment needs as if their lives depend on it — because in many cases, it does. Your health is worth fighting for.
Because TNBC can be more aggressive, early detection is vital. Familiarizing yourself with the signs of breast cancer can empower you to take charge of your health.
The key is to be aware of potential signs like a new lump or thickening in the breast or armpit, changes in breast size or shape, or nipple discharge. TNBC is also more common in women with a BRCA1 gene mutation, which you can be tested for, especially if you have a strong family history of breast cancer.
I’ve learned that it’s also important to know yourself. While incredibly important to help with early detection, mammograms do not find every breast cancer. Or if you’re like me — you might be younger than the typical screening age. This means it's also important for you to know what your breasts normally look and feel like, so you’ll be able to detect any changes.
Support groups and resources tailored to the specific needs of women living with advanced or metastatic breast cancer can make a big difference.
After taking the time I needed to process and accept my diagnosis, I started posting videos about my experience in hopes of connecting with other women, especially those who look like me, are my age, or are moms, too. That experience inspired me to start my non-profit organization, The Tatas 365, which is focused on screening high-risk Black women for breast cancer at earlier ages.
Storytelling can be a powerful educational tool. Advanced or metastatic breast cancer — no matter the subtype — is different from an early-stage diagnosis and can feel especially isolating and scary. Learning from others who have similar experiences and day-to-day challenges living with this disease makes us stronger in the face of it.
One resource I’m proud to support and encourage others to visit is Expose-MBC, which provides a space to get real about metastatic breast cancer and TNBC with honest stories, information, and resources. The reality of life with advanced or metastatic breast cancer is different for each person. It’s important to stay informed and connected. Working together, we can raise awareness and improve outcomes for patients everywhere.
Spreading awareness about breast cancer makes better and earlier detection possible. It’s also possible to treat and live with advanced breast cancer.
The day I received my diagnosis was the saddest day of my life. I was afraid — for myself and my three young daughters, and the terrifying idea that I might not be there for them. It took some time, but I eventually decided that I couldn’t stay frozen in fear and sadness. I knew I had to live for my daughters, and that I had a purpose. Not only do I find strength in my faith and family, but I also find it in the potential of the breast cancer community and in bringing attention to the disproportionate effect of TNBC on Black women. I will have breast cancer for the rest of my life, but I still have my life, and I’m living it as best I can.
LaToya Bolds-Johnson is a resilient breast cancer thriver, daughter, wife, mother, passionate advocate, and healthcare provider. With more than a decade of clinical expertise, LaToya's life took an unexpected turn when she was diagnosed with Stage 3C triple-negative breast cancer. Her personal experience fuels her commitment to addressing health disparities, advocating for awareness, and empowering women to prioritize their well-being.