The process

Since I started telling people I am BRCA1 positive, I've heard three questions repeatedly: How did you decide to get tested?  Should I be tested?  How does it work?

Another writer said it well: "It seemed like breast cancer was always there."  Growing up, I always knew I was missing a grandmother because of breast cancer. And then I lost an aunt to ovarian. Then it was my best friend and my mother in law.  No blood relation, but the impact of watching them undergo treatments was more than some people ever see. (I didn't really realize that until someone said it during our Decoding Annie Parker viewing -- there really are those people who don't feel the impact of cancer pulsing through their veins. I've never been one of those people.)

My personal decision to get tested was made a long time ago, but I was pushed to take action when I was found to be a carrier for another genetic mutation while pregnant with my second daughter. We had to go to a genetic counselor before we could proceed with having my husband tested. That's when we saw how bad my family tree looked on paper and that was just my limited knowledge.

So, while home on maternity leave, I did my research, consulted with my midwife, and called the University of Pennsylvania Abramson Cancer Center to understand my options.

The initial phone call was short and sweet, getting me registered in their system. Not long after, a research assistant called me, inquired as to my family history and my reasons for pursuing the testing and quickly sent me the necessary forms. He explained that once the forms were completed, the team at Penn would evaluate if I qualified for initial counseling and, thereafter, coverage of the test itself.

Then came the hard part. I had to sit down with my parents and delve into the scary realities of our family history.

The document I filled out looked something like this when I was done:

 










I was pretty sure I qualified.

Not long after, I had my genetic counseling appointment set up. I've talked about the post-diagnosis appointment a few times (here, here, here), but my counseling beforehand was something I didn't think I really *needed* because I was very aware of the statistics, etc. And my counselor admitted that I was more knowledgeable than most.  But I had no idea there was an increased risk for melanoma, for example (check out those skin cancer notes above).

And my counselor made it graphically impossible to ignore:

It's easy to see who was affected. And who is no longer with us.  All in black and white.

So, yea, I qualified. What was nice after that was that my counselor and the cancer center became my allies. If insurance didn't want to cover the test, they would take on that fight. No matter the diagnosis, they wanted to come up with a plan for my monitoring (because if it wasn't BRCA, I was still in for it as far as any of us could tell, so they would have monitored me either way). It was something in which I found comfort.

It was up to me if I wanted to go through with the blood draw that day or take time to digest and reschedule.  I decided to do it then and there. When my family went for their counseling later, they waited because there are repercussions to your testing.

While insurances can no longer disqualify you on the basis of this mutation, the federal government could deny you employment with their agencies (unlikely, probably, but possible); you could be denied life insurance or disability insurance or long-term care insurance. It could greatly affect your life plan if you're at a younger age, like my sister is. 

There is a lot to consider when weighing your need for testing and your own place in life. Each and every one of us needs to consider those pieces individually. No one decision is right for everyone.

If you have any questions regarding the process as I've described it or the next steps, please let me know (comments here, Facebook, etc.) and I will do my best to answer.