It still rattles my cage to think that my initially diagnosed generic (not genetic) breast cancer almost ten years ago was recently determined to have been caused by the PALB2 genetic mutation found in my redone genetic tests a couple of years back. Thank goodness my oncologist urged me to test for the newly discovered genetic mutations years out from my breast cancer treatments!
With a cancer diagnosis, most of us want two things — to catch it early and to have it be a common kind of cancer where everyone agrees on the best treatment. What happens when we start to learn early on what is likely to kill us? Genetic cancer testing has a psychological impact as well as possible monitoring and/or treatment consequences. What does all of that mean as a patient?
It is scary to discover you are one of the "special" fish in the lake. If you have not yet had cancer, does it mean extra frequent monitoring, special tests, or even prophylactic surgery? Does knowing you have a genetic cancer mutation increase your fear and anxiety? Even removing my breasts does not make me immune to metastatic breast cancer or a lump developing in an area near where my breasts were.
Who are you going to tell for support? Who are you not going to tell for fear of employment or insurance consequences? Plus, how do you tell other family members who may be at risk because of your genetic findings? No one really wishes other people to have the specter of cancer looming over them too. Friends may not understand prophylactic surgery treatment choices. Family members will have to then make their own testing and treatment choices.
Decide. How much do you want to know? What will you do if something is found? What will you do if something is not found? I remind myself that each of us can only do our best at any given moment in time. We do not know the long-term impact of PALB2 yet. Data across five to ten years is not available yet for some of these more recent genetic cancer mutations. Looking regretfully back or worrying forward are pretty darn futile.
This part is not fun, but it is necessary. Put the appointments or appointment reminders into your calendar and try to get on with living the rest of your life. That is my advice. It is easier said than done. Genetic testing is exciting, new, and preventative, and it does create ongoing stress, decisions and concerns.
It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness - from A Tale of Two Cities by Charles Dickens. Does it sound like the world of genetic cancer testing today? You bet. We each may face some difficult yet hopeful choices. Hang in there and let's talk.