I was 19 years old when my mom died of metastatic breast cancer. From that point forward, I identified as a “patient-in-waiting.” In my narrative I, of course, would eventually be diagnosed with breast cancer, it was only a matter of when. Each time I went for a screening, I thought, “Is this the time? Will I finally move from patient-in-waiting to just patient?” Every time I felt a change in my body I thought, “Oh this must be cancer.” (Except for the time I had pain in my back and tried to convince my husband I had spinal meningitis.)
Genetic testing was available. I could have had answers, but I put it off for years. I wasn’t feeling symptomatic even though I was psychosomatic. I feared the results, even though I convinced myself that obviously I would test BRCA+. I lived with the fear of cancer as background noise for so long, my narratives became creative writing where I believed I would have a cancer diagnosis and it would destroy me.
Fear is a liar and a bully
We are all overachievers when it comes to imagining worst-case scenarios. Wes Craven couldn’t even come up with some of the scary narratives that most people create around clinical lab testing and their health. The problem is we treat these narratives as truth. In many instances, fear is a liar and a bully.
And even if our worst fears come true, we will manage them, we will navigate the situation, and we will figure things out. I know this because I worked for Sharsheret, a national not-for-profit organization supporting young women diagnosed with breast cancer.
I found out that my narrative wasn’t original. Thousands of women calling into Sharsheret engaged in the same creative writing. The story was mostly the same. “I don’t want to undergo genetic testing.” “I’m not ready to know the truth.” “This isn’t a good time.”
Is there ever a good time to find out you have cancer? Has it ever happened that someone checked their calendar and said to themselves, “Great. I think I have a block of free time in November to receive a cancer diagnosis.”
What didn’t occur to me or to any of these women was maybe health screening tests could be a relief from fears that have been bullying us for years. What if my fears were lying to me? What if I tested BRCA-? What if I tested BRCA+?
Change your narrative and create more choices
Before even one drop of blood was taken from my body, I met with a genetic counselor. She patiently answered all my questions, and for the first time, I understood that genetic testing would save my life, psychologically, emotionally, and/or medically.
If I tested negative, I would change my narrative and realize that I wasn’t necessarily destined to live my mother’s fate. I can put my fears to rest and just continue to be vigilant about my screenings and breast exams.
If I tested positive, I would have choices. Choices that would empower me. Being bullied by fear, I disabled any choices I had available to me. Choosing to look fear in the eye, I now opened my world to choices that would save my life.
In the end, I tested BRCA-. Although I felt relief, I remain vigilant with mammograms and MRIs, because that is the responsible thing to do.
I’ve spoken with thousands of women who ultimately chose to undergo genetic testing. For those who tested BRCA+, it feels like being hit across the head by a 2 x 4 piece of wood. But in almost every instance, the women stood up, found their footing, put together a medical team and support team, and made choices that were right for them.
In reality, thoughts that bully us only have the power we allow them to have. My current narrative is that knowledge can beat fear of the unknown on any playground in the world. Genetic testing and clinical lab testing empower us with choices that can save our lives. I'm a strong advocate of speaking with primary care physicians and genetic counselors to determine if testing is right for each individual. Gather information. Change your narrative.
Shera Dubitsky is a Therapeutic Coach who has earned three master’s degrees in Clinical, Counseling and Educational Psychology, and completed the course work and clinical training toward a doctoral degree in Clinical Psychology. She is the Senior Advisor on the Medical Advisory Board of Sharsheret, where she previously served as Director of Support Services for 13 years before opening her own practice. Shera has over 30 years’ experience working with children and families living with trauma.