Before Genetic Testing, Take Time to Plan
A Blog for Proactive Genes, Written by Kristen Carbone
In 2003, when my mother, Lisa, and I first talked about getting genetic testing, my thoughts were only about her. She’d beaten an early breast cancer diagnosis almost two years before and, at 21, I had virtually no thoughts about my own mortality. My mom, of course, was worried about me. Ultimately, we decided not to get genetic testing because there was no legislation protecting people with confirmed hereditary risk against insurance discrimination. When we made our decision, I promised that I’d be diligent. I’d start screening early. I would take care of my body. I would advocate for my health.
A few months later, my mom’s cancer came back. It had metastasized to her brain and eventually found a home in her bones, liver and lungs. Shortly before her death in late 2005, while we were eating lunch, my mom mentioned that she wished she’d gotten more life insurance. This emotional math equation struck me as genuinely morbid. How can you attach a dollar amount to a life missed, time not spent together? What is the cost of a broken heart?
Months after my mother died, a check arrived in the mail. Now, almost 14 years later, the money is long gone. I spent it hosting holidays, on a birthday gift to myself every year for almost a decade, on gifts for my two children when they were born and on the medical bills from breast cancer screenings that my health insurance didn’t cover. The last chunk went to the deductible for my preventive mastectomy in 2013. I appreciated every penny and didn’t take for granted that I had a decade-long cushion allowing me to do things that would have otherwise been outside my reach. My mother’s life insurance money allowed me to take the steps to secure my healthy future.
In 2008, I finally had genetic testing and learned that I didn’t have the BRCA mutation. But because of other hereditary risk factors, including a family history of breast cancer, I started regular screening until I decided to pursue surgical intervention.
Over the last year, my preventive oncologist has been suggesting that I undergo expanded panel testing. In the years since my initial testing, many more genetic markers for breast cancer have been discovered. The thought of having more testing sent me into a tailspin at first. My anxious and uneasy feelings recalled the hurricane of emotions I felt when my mom died, when a routine ultrasound revealed I had a breast lump and when I faced a series of emotional choices about surgery and reconstruction. What would I do if I learned I had a mutation that predisposed me to other cancers? Would I need more surgery? What additional foreshadowing would this have for my children’s health? I simply wasn’t ready to know.
Even in what can be considered a best-case scenario, in which I was able to make the choice to reduce my cancer risk through surgery, this decision required me to put my whole life on pause. I juggled the logistics of single parenthood, surgery, my job and household management pretty well, though I’d be remiss to ignore the army of help I had. However, my life was still affected by many critical things that none of my doctors ever discussed.
The list of things I was unprepared for due to my preventive mastectomy is almost endless.
Here are a few examples:
Animation deformity (distortion of the reconstructed breast when the pectoral muscles engage).Constantly feeling cold.Muscle aches and spasms.Difficulty finding a bra.Sexual function issues.Those are just the everyday annoyances. On a more impactful scale, when preparing for medical attention associated with hereditary risk, there is an appropriate order of operations that if done out of sequence can cause significant problems. One of the most important is life insurance: If you have a genetic mutation, chances are that you’re not eligible for a decent policy.
Not a single person suggested that I get life insurance before undergoing genetic testing, nor did it occur to me to consider how it would affect my (and my children’s) ability to get insured — until I met a previvor who sells insurance, which brought the topic to the front of my mind. Now, I feel lucky that I’ve been putting off a second round of testing, because the delay gives me time to explore our life insurance options.
This process, and the time I’m taking to do it, has given me perspective on my experience with screening, mastectomy and reconstruction. In hindsight, I realize that I should have taken more time to ask my doctor questions and brought a friend to take notes. I should have talked with more women about their experience to help guide my choices and better inform me about my options. Now, when I meet women facing these choices, that is the advice I give.
Of course, this lesson about slowing down and being more considerate is one I can use in all areas of my life.
Article originally posted on proactive genes.com