Thank you to Natasha Lavender for writing my story for SELF magazine.
I hope that it is helpful.
Read the whole piece, at SELF – CLICK HERE
Stephanie Johnson was 38 when she was diagnosed with stage 3 triple negative breast cancer in September 2011. After learning that she had the BRCA1 gene mutation, which can greatly increase your risk of getting breast and ovarian cancers, Johnson had chemotherapy followed by a double mastectomy and oophorectomy (removal of her ovaries). She also had a hysterectomy to remove her uterus. (This isn’t part of the standard recommendation for people with BRCA1 gene mutations, but there’s some concern that this kind of mutation can increase a person’s risk of developing uterine cancer.)
Johnson was officially pronounced cancer-free on Valentine’s Day 2012. Since then, she’s wrestled with—and largely overcome—her fear that this notoriously aggressive form of cancer might come back.
Overall, the prognosis for triple negative breast cancer is often worse than the prognosis for other forms of this disease. Part of the reason why it’s viewed as the hardest form of breast cancer to treat is because it lacks receptors for the hormone estrogen, the hormone progesterone, and a protein known as human epidermal growth factor (HER2/neu), the National Cancer Institute explains. This means that hormone therapies and drugs designed to target those HER2/neu receptors won’t work for triple negative breast cancer.
It’s now thought that there are multiple subtypes of this cancer, some of which respond more effectively to chemotherapy than others. In addition to chemotherapy, oncologists may use surgery and radiation to remove and attack triple negative breast cancer. Researchers are also working to develop additional triple negative breast cancer treatment options, like immunotherapy drugs.
Even with successful treatment, triple negative breast cancer is more likely to recur than many other types of breast cancer, typically within the first five years after diagnosis. When triple negative breast cancer does recur, it’s usually even more difficult to treat than before. It’s no wonder why fears of recurrence often plague triple negative breast cancer survivors like Stephanie.
Nearly eight years after getting the all-clear, Stephanie talked to SELF about how she’s learned to cope with her fears of recurrence by trying to make every day count.
No one expects to be diagnosed with breast cancer. I definitely didn’t. I was very independent as a divorced single mom of two boys who were in high school. My youngest son was a freshman, and his older brother was just about to graduate. I was just living my life, working as a photographer and artist. I also had a regular gig at a bar.
I didn’t have health insurance when I found a lump on my left breast. It was visible right where my areola met the other skin on my breast. I could feel it with my fingers. I’m pretty pragmatic, but I was also scared. Once I could tell that it was growing instead of going away, I did assume it was cancer.
After that, my first thought was, Well, I need to get diagnosed so I can at least know for sure that this is what’s taking me out. That was my assumption: that there was nothing to be done about it. For a while, a lot of my fear was just trying to reconcile that this was probably going to be what killed me. I was like, I really don’t want to leave right now, I’ve still got stuff to do.
I was only 38—too young to be having regular mammograms to check for breast cancer, which the United States Preventive Services Task Force recommends every two years starting at age 50 for people with an average risk of getting this disease. I didn’t realize that my family history put me at higher than average risk of getting breast cancer until later. My mother’s sister and their mother both had breast cancer in their 30s.Most Popular
Fortunately, even without insurance, I was able to go to the Bridge Breast Network here in Dallas. It’s a nonprofit that helps people in North Texas who have concerns about their breast health get access to diagnostic and treatment services when they’re uninsured, underinsured, and/or on a low income. With their help and Planned Parenthood’s, I was able to get a mammogram, biopsy, and diagnosis.