Genetic testing sounded like a futuristic concept when it originally came to our attention. It sounded something to the likes of cloning. We didn’t really understand what it was and why it was important, but rather thought it sounded like something out of science fiction. Thankfully, our medical providers and genetic counselors stuck with us until we understood the benefit.
Growing up, our family was blessed and untouched by cancer. We didn’t have any immediate family members treated for or diagnosed with cancer in our childhoods. We were familiar with the term cancer but didn’t know what it MEANT. That all changed in our early 20s when our mother was diagnosed with uterine cancer. She had already been through menopause and therefore knew when she had bleeding that something was wrong. We often wonder what would have happened if she had been younger when the cancer occurred, and she didn’t have that indicator?
Thankfully, our mother was an employee at Vanderbilt, where she was referred to the genetic department for genetic counseling and testing and was diagnosed with Lynch syndrome due to an MSH6 mutation. We met with the genetic counselor at that time who did a great job in explaining what it meant if we had a mutation and encouraged us to get tested. This was in the early 2000s, when testing was thousands of dollars; and we were also worried that if we had the mutation, it could be considered a preexisting condition for insurance companies. These concerns and being frightened to hear we were potentially predisposed to cancer led to our decision to not move forward with testing
Our mother battled her uterine cancer and recovered. Later, she was diagnosed with kidney cancer and even later still melanoma. This temporarily caused us to bury our heads in the sand even further. However, eventually as our 20s turned into our 30s we realized this was something we shouldn’t ignore. Insurance now covers the testing. Law states that you can’t consider it a pre-existing condition. Our excuses were being removed and we decided it was time to move forward and see if we also had the mutation. Stefanie was the first to meet with the genetic counselor. Testing was so easy, they used saliva, so no blood was even needed to be drawn. Shortly after, the results came in that Stefanie had inherited the MSH6 gene mutation from our mother. Being identical twins, Meghan knew she also had this mutation, even before she was tested mainly as a formality.
Although the initial diagnosis of having an MSH6 mutation was scary, we realize it is scarier not to know. Since the diagnosis, we are now screened every year with colonoscopies and kidney screenings because of our family history. We both recently had our uterus and ovaries removed preventatively. We have an older sister who recently decided she also wants to get tested. We are so grateful and feel at peace that we can be prepared to minimize the impact any potential cancer diagnosis has on our lives thanks to our doctor’s monitoring and care. If cancer shows up, we are now READY!
› Stefanie Curtiss & Meghan Durrick
Stefanie now has two workshops a year on the benefits of genetic testing. Meghan now acts as an advocate for those who don’t have access to affordable healthcare and/or are afraid to explore their medical needs.