“Precision medicine, in the form of screening and early detection, helped save my life, but a lot needs to be done to ensure it helps everyone”
By Patricia Turnbull, MOHCCN Patient Working Group member
My name is Patricia Turnbull, and I was diagnosed with triple negative breast cancer on May 24, 2007. Since then, I’ve had breast cancer twice, fallopian tube cancer once and bladder cancer six times. Needless to say, I’ve been dealt a bad hand in the cancer department, but I believe that complaining is a waste of time. Instead, I prefer to share my story and my thoughts.
When I first received my diagnosis, survival was first and foremost. My mother had passed away a month before, so I just shut down and went into full survival mode. I remember that time of my life as a whirlwind of cat scans, MUGA tests, bone density scans, chemo, surgery and radiation. It was not fun, but it worked, and I am grateful for that.
My connection to precision medicine came after. Once I completed chemotherapy, surgery and radiation for that first cancer, I underwent genetic testing, which confirmed that I have mutations in both BRCA 1 and 2 genes. The testing was done because my mother had breast cancer and because I had breast cancer at a young age.
Knowing this information changed my life. It meant that I could get additional screening which helped catch my second breast cancer earlier. Continued scans caught my bladder cancer and have enabled ongoing monitoring, all of which have helped me get to this point.
Precision medicine, in the form of screening and early detection, has helped save my life, but I believe that there are some things that need to be considered to ensure it helps everyone it can.
For one, I think it is important that we consider quality of life, and not just survival, as a central piece of the equation. Imagine you are diagnosed with terminal cancer, and you find out that a precision medicine treatment will give you a few more months. A few more months with your family can be great, and some may choose to undergo it, but what if that means you would be in severe intractable pain for the rest of your days? Finding ways to measure quality of life, and not just quantity, should be central as we enter a new era of precision medicine.
Another issue has to do with finding ways to target mutations more effectively. Imagine you develop cancer and precision testing determines that it is a rare mutation or an orphan mutation that cannot be treated. We need to come together to find ways to close the gap between testing and creating targeted treatments.
The financial piece is also important. Most people who I’ve met that had sequencing done had to pay for it out-of-pocket. Does that mean with the cost of testing and treatment only rich people can get precision medicine? We need to ensure equitable access to precision medicine for it to help as many people as possible.
I envision a day when all these things are addressed; when precision medicine makes cancer a speed bump in the journey of life, not a gigantic sinkhole. I can envision a day when precision medicine will make it so that cancer is no longer a death sentence, when our bodies will be our own again. I envision a day when we all benefit from precision medicine. There’s a lot of work to do to get there, and we’re not going to get there by complaining.
"I envision a day when we all benefit from precision medicine. There’s a lot of work to do to get there, and we’re not going to get there by complaining."