WHAT I WISH I KNEW BEFORE GENETIC TESTING

Every year, there are more and more stories about young women, many not yet mothers, who are pursuing genetic testing and joining a growing Club of Previvors. As I read their stories, I am deeply struck by just how different the world now is for women wishing to explore their genetic cancer risk and to act on behalf of their health. When I and my family underwent testing, it was as part of a pilot study. There was not yet insurance coverage for the testing. My family members were among some of the first to undergo genetic tests for BRCA1 and BRCA2 genes, so no one really knew what should come next. I guess you could say we were pioneers. Looking back, there are of course some things I wish I knew in advance of my testing and following surgeries. Here goes:

1. Doctors typically do not agree on the needed course of action. If you consult enough doctors, their recommendations may range from careful watching to radical surgery;

2. That the estimated lifetime risk of developing cancer associated with a BRCA+ status would (and probably will) repeatedly change;

3. That the treatment for breast cancer would change (mostly for the better);

4. That genetic testing was in such an infancy stage, doctors didn’t actually know what to recommend (but that wouldn’t keep them from making recommendations anyhow);

5. That my Plastic Surgeon, who strongly recommended silicone implants over saline, was serving on the board of the company that manufactured those implants;

6. That I would have a negative reaction to the silicone implants and require 2 extra surgeries, only to ultimately end with saline implants;

7. That knowledge is power, but at some point, knowing too much about things over which we have no control may instill more paranoia that power. I often wish I had never looked into estimated risk rates of other cancers associated with a BRCA2 carrier status because much like the estimated lifetime risk for breast cancer, it’s still being researched and information is confusing, contradictory and very much in infancy stages.

While there are many things I wish I knew or better understood prior to seeking genetic testing and having prophylactic mastectomies and an oopherectomy, I do not regret the decisions I made. I did the best I could with the information and resources available to me then. And while the medical science has come so far since then, all of the lessons I learned then help me to better advocate for my own health today. I hope they can help you or someone you love too.

Susan Beausang, 4Women.com