In my last post, I responded to an article in the NYTimes Well Blog by Emma Pierson, who shares how learning she carries a cancer gene has transformed her life.
Faced with "the cruel weight of a paradox: you can never know whether you want to know until you already do," what do Healthy Survivors do?
One approach is to list all the possible ways the knowledge might help you or hurt you. Of course, you can only make an educated guess at what you'll feel and how the knowledge might help in the future.
You may be right on-target. But you may be blindsided by your actual response and issues that arise.
For me, the key is this: Will knowing I have a particular cancer gene help me get good care? If the answer is "yes," then I learn what I need to learn and use the knowledge positively.
As for the anxiety that remains, I try to use the unwanted, unpleasant feelings in positive ways. For example, my knowing my lymphoma will likely recur pushes me to savor not needing treatment now and all the pleasures that go along with this remission.
After I've done all I can to benefit from the knowledge, or if I discover I can't leverage knowing into something positive, I push the knowledge into the far recesses of my mind, from where it cannot affect my sense of self or current joy.
Next: How Healthy Survivors can know something without thinking about it.
For me, gene testing only offered confirmation of what I already knew: In a family with 3 generations of breast cancer, my ovarian cancer had to be linked to my genes. Confirmation helped me decide how to deal with my risk, but more important was the ability to inform my 7 siblings and 20 cousins of their risk so they could decide whether to get tested and, if positive, consider ways to reduce their own risk or monitor for early signs of disease.
The best result was learning that none of my sisters carry the gene, so neither do their kids.
Posted by: Finn | January 21, 2013 at 05:29 PM