Is Genetic Testing A Scary Road to Travel?
It is one of the hot topics in the medical world, “Genetic Testing”. A recent report from NBC Nightly News reports on the the risks and benefits of genetic testing. Why do individuals choose to do it? What are the benefits and risks? What is the cost? Is it covered by insurance? Does it risk an individual’s chances of further insurance coverage in the future if they test positive?
My Own Personal Experience
I can only speak from my personal experience and reasons to explore genetic testing for myself. There are certain criterion that determines if you are a candidate who will likely benefit from genetic testing. I fit two of those conditions. One, I had breast cancer at a fairly young age, 47. Two, I had a recurrence of the original cancer I had at 47 but more importantly a newly developed breast cancer at age 58.
Hitting an Emotional Roadblock
I was advised last year by my health care team to move forward with and explore genetic testing for those reasons. I went as far as the genetic counseling but, I hit an emotional roadblock. In one year I had a double mastectomy and recovery. Decisions were being made about whether or not I would need adjunctive therapy besides the AI (Aromatase Inhibitor) that I started on immediately after the diagnosis. I dealt with the side effects, although mild, of the AI. I was researching microsurgeons to perform DIEP flap reconstructive surgery. I had phase one of that DIEP flap surgery and the recovery from that last year. Additionally we dealt with a death in the family. It was the year of the “perfect storm”.
As stated, I actually went through the counseling part but couldn’t bring myself to go through with the testing. Here is part of that emotional roadblock and something for the reader to consider. I was carrying the entire weight of the results on my shoulder. I did not once consider coming right out and asking my children and effected relatives if they wanted to know results from the test. The thought never crossed my mind until I spoke to my breast reconstruction surgeon about this. I thought the news, good or bad, was mine to bear. I think that’s just where my head was at a year ago, mired in the minutia and all that comes with receiving the grim news of another cancer diagnosis.
He gave me some very sound advice. He told me that if I was emotionally close enough to my siblings and effected relatives the question should be posed to them. He suggested asking if they wanted to know the news or not because it was their option. I did just that. What I found out was this. They were all far more pragmatic about it than I ever imagined. The resounding answer was, “Yes, especially if it means potentially saving my life or being proactive and vigilant about my own health.” Out of the group I told only one is still contemplating and researching whether they want to get the news or not. I respect that. That is what the discussion is all about, being informed and making choices.
Finding Clarity
But the questions still remain. I found a very helpful and informative website that poses the questions and answers here at the Nation Cancer Institute. I invite you to carefully consider all questions and talk to those trusted healthcare physicians who respect your personal beliefs, the research you do to be informed and what you need to know to make this important but difficult decision. Thank you to my reconstruction surgeon, Dr. Chrysopoulo, for bringing clarity on my behalf. I will be moving forward with a discussion with my health care team in my home town this summer to discuss next steps.