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.
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.
I learned that I had breast cancer over the phone. It felt like someone had punched me in the gut. During the biopsy, the doctors figure out the grade of your tumor (meaning how likely it is to grow and spread), your stage (meaning if and how far the primary tumor has advanced), and the types of receptors on the tumor. When I met with the oncologist, he told me that I had a stage 3 grade 3 triple negative invasive ductal carcinoma. In short, I had a very aggressive type of cancer that was already quite advanced. He also explained that while triple negative breast cancer can respond well to chemotherapy, if that didn’t work, there weren’t targeted treatment options.
When something bad happens, my first instinct is to research so I know more about it. The more I know, even if it’s bad news, the better I feel. So I dove right into research about triple negative breast cancer. I was very much asking lots of questions. If I can’t control what’s going on, I can at least control how much I know.
I wish I could have also controlled how the treatment made me feel. I got diagnosed in September 2011 and needed to start treatment as soon as possible. The people at Planned Parenthood helped me fill out paperwork to get the Medicaid that Texas offers if you have breast cancer. After that, I went to chemotherapy every other Tuesday from around mid-October to January.
Chemo is different for different types of cancer, and people respond to it differently. It knocked me down for the count for a while. I had a lot of bone and muscle pain. At one point, I was under my coffee table, gripping the legs, just thinking, This is it, this is what’s going to kill me. My hair falling out was tough too. It’s hard for me to be vulnerable in public. Looking like a cancer patient and seeing people do the sympathetic head tilt was very uncomfortable for me.
I was also struggling with fears about leaving my kids. I just wanted to live long enough to see my youngest graduate from high school so they would at least both be legal adults. I thought, If I can do that, everything else is gravy. My sons did tell me they were scared, but I tried to stay positive for them.
After learning that my mother’s sister and their mother had had breast cancer, and given my young age at diagnosis, my doctors ran further tests that showed that I had a BRCA1 gene mutation. It’s the only thing I’ll ever have in common with Angelina Jolie. Because of that, my doctors strongly recommended that I get a double mastectomy to remove both of my breasts, which I did in January 2012. I also had an oophorectomy to remove both ovaries and a hysterectomy to remove my uterus. After the mastectomy and before the oophorectomy, on February 14, 2012, I had a meeting with my oncologist. He told me that tests on the tissue removed from my breast and checks made during surgery found no evidence of cancer. I was officially cancer-free.
At first, it didn’t seem real. To go through all of that then hear that I was cancer-free felt unbelievable. Even when I did start to believe it, there was this underlying fear and assumption that my cancer could always be there or that it could come back, especially for those first five years. Every minor ache became a question: Is this because I sat weird, or is it because I’ve got a tumor growing in my chest? It wasn’t just cancer I was afraid of, though. Some of my fear was about dealing with the chemo again, because going through the first time was so awful.
Thankfully, that was nearly eight years ago. As I’ve gradually gotten more removed from the experience, I’ve also gotten to a point where I can accept the fact that, yes, my cancer could come back. But I’m not going to let that stifle what I do with my life. You can let the fear swallow you whole, or you can be the one who swallows the fear.
During treatment, I was so focused on the task at hand of physically treating my cancer. When I finished treatment, I wanted to address the mental part of what I’d been through, so I started going to a therapist. The cancer center I went to had therapists, so it was easy to find people that way.
I was lucky because I already had a good support system thanks to my friends, my community, and my now husband, Jake, who I actually started dating right after my diagnosis. Still, it was good for me to have an objective person who was there to keep me on track mentally. A lot of situations—cancer and otherwise—require changing the tape running through your mind and talking yourself through the hardships. Being able to narrate my way through it and say, “No, I’m not thinking about dying today,” being proactive about my mental health versus reactive—those are solid coping skills I learned in therapy. Therapists are gold, especially when dealing with the chaos and trauma of illness.
When I came out on the other side of having triple negative breast cancer, I was standing in new territory. The way I viewed things was different, and that included understanding that I had the ability to craft my existence after a year of being sick. Now I make an effort to live purposefully every day.
Jake helped me a lot with this. With all of it, actually. He’s been a tattoo artist for 20 years, so he was never afraid of the drains coming out of my sides after my mastectomy and things like that. But I carried a lot of guilt when we started dating. I was like, “Why would you want to get in a relationship with me if I’m going to leave you?” He’s helped me to be a little more like him in that he taught me to live in the moment and just go for it. He was just like, “Even if you’re only here for three years, that means I get three years with you.” That’s really affected a lot of my perception of life.
All of our lives are finite, and I think that should be a driver to be more purposeful. That could mean getting a different type of education—I went back to school after treatment and got a degree in Mass Communications. Or it might mean traveling—I have a goal of photographing every National Park in the country before I leave this Earth. Sometimes it’s about whittling down your community because not everybody’s good at dealing with illness. That’s not a slight to them. We’re all different with how we deal with things. But some people will fall away, and you’ll gain others because you join this club that you didn’t intend to sign up for.
Basically, I try to act in ways that are in line with my belief system and what I want to do in life. It makes everything more enjoyable. Even the challenges that come along are more enjoyable when I know that this is the road I want to be on. Some people look up at a point in their lives and think, How did I get here? It’s a laundry list of decisions—often teeny decisions—that bring people to that point. We all have friends who have those stories, and I actually think it’s fortunate that I was jarred awake.