Getting Tested

Genetic testing is more than a blood test. Here's what I went through and some steps you need to take before you get tested.

As I mentioned in previous posts, the decision to get tested was an easy one. But even though the choice was simple, it still took me almost a year to get tested. I blame this partially on the pandemic, but also on all the steps I needed to take before I was ready for a result.

I started my testing journey with my gynecologist (at the time I didn't have a primary doctor). During my annual I informed her of my family history and my desire to get tested. Because I have fairly good insurance through my employer she referred me to the women's hospital down the street. There I would have access to an entire team of genetic specialists, counselors, and if needed oncologist and surgeons.

Before I could make an appointment for a consultation, I had to fill out an extensive family history questionnaire. The nurse practitioner required history for both sides of my family as well as any of their previous results. During my consultation we discussed my risk score, the different types of tests, and the items I would need to get done before my test.

It then took me some time to get my ducks in a row. I had to get life insurance, comb through my insurance benefits, and just generally get mentally prepared. Six months later I was finally ready to make an appointment for my testing. This part was like any other exam, and my appointment took about 45 minutes. The nurse checked my vitals, took my blood, and I was sent on my way! Now it was just time to wait for my results.

What to do before your BRCA test

There is more to genetic testing than getting your blood drawn. Some of these items may be more intuitive than others, but either way you want to make sure you are fully prepared before your test.

• Gather a complete family history. Genetic counselors, insurance companies, and testing sites are going to ask for a family history to help determine your risk level and if testing is required. Therefore it's a good idea to gather that information in advance. Additionally, if any family members have tested positive in the past, you're going to want to ask them for their test results.

• Check insurance requirements. Most insurance companies won't cover the cost of genetic testing unless it is "medically necessary." What is necessary varies between companies, but it mostly depends on whether there is a family history. Knowing what and how much is covered can help when choosing a testing option, so make sure to read those benefits docs!

• Choose a testing option best for you. Insurance options can influence testing options. For me, this genetic test was covered by my insurance due to necessity. This allowed me to get my testing done directly through a genetic specialist referred to me by my gyno. My cousin is self employed and didn't have the same options. Instead she chose a consumer directed testing center that provides a wide range of genetic testing and even had a phlebotomist come directly to her house!

• Choose a type of genetic test. (If applicable) The genetic specialist I went to uses Myriad Genetics as its testing option. This meant that in addition to a BRCA 1 test, I could choose to get a complete genetic analysis. However, due to my insurance plan and the fact that my family history is only with BRCA 1, I chose to do the simple BRCA test. If you're testing facilitator has options, make sure to look into them and weigh all the pros and cons.

• Get life insurance. This may seem like an odd/morbid action item, but it could be extremely important. As it stands, there are no federal protections for genetic results when it comes to life insurance. In fact, as far as I know, only Florida has a genetic privacy law that prohibits a life insurance company from discriminating based on genetic information. This means it could be inordinately difficult for you to find a life insurance policy at a decent rate after you find out that you're BRCA+.

• Be prepared. Finding out that you're BRCA+ can be overwhelming if you're not fully prepared. Knowing the details around a positive result could ease the initial shock and help you focus on the game plan for the future. For me, knowing what I could potentially be facing helped soothe my anxiety and allowed me to ask the right questions when the doctor finally told me my results.