There's no substitute for first-hand experience. That's why the insights in Theodora Ross' A Cancer in the Family (Oncology Times, July 25, 2016) are so useful for clinicians caring for patients whose cancer may be hereditary. Here I'll add my own personal insights from a few weeks ago, after finding out I carry a deleterious mutation.
This diagnosis was nothing like the crisis of my lymphoma diagnosis 25 years ago. My world didn't stop. I wasn't ill or needing urgent intervention. Along with my physicians' expert and compassionate care, the stabilizing mantras that had taken me years to develop had become second nature and helped me adjust in a matter of days.
I'm not suggesting that processing the news was easy. Surprising thoughts and feelings arose as I tackled the twin challenges of making medical decisions and notifying family. The biggest surprise was my initial shock, given my clear understanding of the statistics. Just as I knew a coin toss is still 50-50 after 10 tails in a row, I knew my odds were 50-50 of having the same mutation as my sister, despite my blue eyes and sandy hair to her brown and brunette. Even so, I had anticipated a negative result.
That expectation makes no sense, unless you consider the practiced script I'd been using about my genetic risk since 1990: “My cancer is not hereditary. My genes are fine.” That perception, like that of my gender, was so fundamental to my sense of self that I often emphasized a strong belief by adding, “I know it in my genes.” Maybe that's why I'd continued my comforting trope about my healthy genes while we evaluated my risk in the context of my sister's mutation—a completely new equation.
If your patients seem inappropriately shocked (or not shocked), it may be because their expectations were overwhelmingly influenced by their perceptions and beliefs—for example, about their luckiness in life. Then again, your patients' initial reaction may have nothing to do with their expectations.
As my genetic counselor began elaborating on my results, shock gave way to my first coherent thought, the exact same one I had after my first cancer diagnosis: “Oh, no. My children.” Only this time my fears were different. Before I'd worried about scarring my children emotionally, which mobilized me to learn how to help them grow strong through adversity. This time I feared for their physical well-being and felt powerless to alter their chance of having inherited the deleterious gene...from me.
A sickening guilt bubbled up: my kids might have cancer-related medical issues because of me. If not for this column, nobody would have known I suffered a wave of guilt about my genes. Thanks to the wisdom of an oncology social worker, the guilt washed over me fairly quickly. Recalling a session from decades ago, when I'd confessed to feeling responsible for the negative impact of my cancer on my loved ones, I replayed her response, “Wendy, you did nothing wrong.”
Stopping Genetic Guilt
I encourage physicians and nurses to address guilt up front: This is not your fault. Don't waste energy on undeserved guilt. Patients need the energy to do a good job presenting the news to their children and then modeling healthy ways of dealing with whatever lay ahead.
For my children's sake, I kept focusing on the overriding benefit for all of us, an approach that unexpectedly comforted me as a parent. My genetic testing really helped my children, both by preserving their mother's (i.e., my) health and by enabling them to decrease their own risk of cancer.
Only then did my thoughts about the mutation turn to the implications for me. My world felt slightly off-kilter, and not because of the impending scans and possible surgery. As a veteran patient, used to jumping through hoops, what disoriented me was the sense of vulnerability. Let me emphasize that I functioned fine during the day, making decisions and staying fully engaged in everyday life. It was only while sleepless in the wee hours of the night that anxieties made me feel vulnerable in a whole new way.
I was 36 years old when told my lymphoma was not hereditary. Ever since, I'd perceived my healthy cells protecting my body from mutated cells (Other) with treatments during recurrences and independently during remissions. The genetic test results meant all my cells were Other. In terms of the multi-hit theory of tumorigenesis, all my cells had started out with a hit and then had sustained additional hits from my radiation and/or various chemotherapies. Suddenly, I felt like a walking time bomb.
Mantras helped defuse all that imagery by exposing the fallacies and reframing the frightening truths. Within a week, I was sleeping well and feeling like myself again: whole, healthy, and at peace with the uncertainty of my future health. When anxieties resurfaced, I reminded myself:
- The news did not change your condition. You are the same as yesterday. The only thing that changed is what we know about your risk.
- Your genes don't define you. You are your thoughts, feelings, and actions. This gene never defined you before; it doesn't define you now.
- This is nothing to be ashamed of. You are not damaged goods. You are as healthy and whole as always.
- The mutation only increases the risk for a few types of cancer. For most of your body, the gene is insignificant, like a stain on the underside of a chair.
- You are less vulnerable because we know about the gene. Now we can take advantage of risk-reducing steps.
- This information enables you to help protect your family members.
- We are talking about preventing cancer, not treating cancer.
Knowing about my mutation does not change what is. It changes what I can do about what is. My physicians are guiding me to the best decisions for me. Meanwhile, researchers are developing better diagnostics and therapeutics. Whatever my children's test results, their lives will be better because I was tested. That's something I know in my genes.