Part 3: The Nitty Gritty

[author] [author_image timthumb='on']http://www.periwinklepapillon.com/wp-content/uploads/2011/07/sara_profile_pic.jpg[/author_image] [author_info]This is Part 3 of my discussion in getting tested for the BRCA 1 and 2 tests.

For Part 1: Girl Parts click here.

For Part 2: A Decision click here. [/author_info] [/author]

When you google breast cancer genetic testing, you will end up at Myriad Labs one way or another.  They have cornered the market on this. This is the company that I went with when I finally decided to get tested for the breast cancer gene markers.

Myriad’s website is chock full of information. Complete overload for someone just looking to see what is involved in getting a genetic test. But important information nonetheless. I started my investigation into the matter there.

Mentally deciding whether or not to get the test is no joke.  Physically, I would learn, it’s a piece of cake.

Source: Lyme Pregnancy

It’s a simple blood test where they take two vials of blood and mail it off.

Poof, that’s it.

Three weeks later a genetic counselor calls you to schedule an appointment to go over the results. Given the gravity of the message you would expect bigger hoops for everyone to have to jump through but in all honesty once you decide to go through with it you only have your mind games to mess with you.

I will describe my personal experience which involved a wonderful counselor we will call Rosemary. I understand that not everyone gets an amazing genetic counselor like Rosemary, who holds your hand as your recount your life story and generously offers Kleenex while not judging as you do an ugly cry in her office.

Forgive me if it can be different but this will give you the gist, and I will HOPE that everyone gets to meet a Rosemary type should they decide to get tested.

The genetic counselors first job is to take a detail family history and subsequently assess the likelihood of your testing positive for the gene even before you roll up your sleeve.  She will write up a report and using statistical models she will make a recommendation to the insurance company on your behalf asking them to pay for these über expensive blood tests.

Next, she will assess your mental stability by carefully prodding as to your motivations for getting the test. This is where you can expect the tears to flow and her Kleenex supply to be never ending… Bless her heart.

She will be gracious, professional but tender.  (Again, I’m hoping for your sake she was like my Rosemary).

Then depending on just how ugly your cry is and how you answer her probing questions, she will then counsel you as to whether or not you should even take the test.  She may be concerned as to whether or not you can handle the results or be willing to go through with any of the recommended preventive measures should you receive a positive results.

In a nutshell, you are taking the test because you have to be willing to do something different if you test positive. Once you know – there’s no turning back. The statistics if you have the gene markers are just mind numbing.

If you test positive for the BRCA 1 and 2 tumor markers you have up to a 50% risk of developing breast cancer before age 50 and up to an 87% risk of developing it by age 70. While the general population is at a 2% and 7% respectively.

source: Myriad Labs

I studied these facts and then made a powerpoint presentation. This is how I told my husband I was ready to get tested. I made a slideshow.

If you’ve ever doubted me when I say that I’m a geek at heart that should clinch it for you.

I’m a total geek.

In my slideshow I also paraphrased every bit of data I had learned. Including the recommended next steps for which I included this chart:

source: Myriad Labs

After I laid out my family history and then overlaid the facts, it was a bleek outlook and I wanted us to be on the same page. By my calculations I was at a much higher risk of testing positive.  I was convinced I was going to be looking at a mastectomy and possibly an oopherectomy as well (removal of ovaries).  I was prepapred.

Have I mentioned that I have a slight anxiety issue? It’s possible I was overreacting.

I made us both read  Pretty is What Changes the autobiography of Jessica Queller and her journey to get a preventive mastectomy after unceremoniously receiving test results that she tested positive for the BRCA gene.  It’s a MUST read for anyone considering genetic testing as you will walk away with a clear understanding of what you must be prepared to face.

I also lurked on message boards over at FORCE, an acronym for Facing Our Risk of Cancer Empowered which was mentioned in Jessica’s book. They talked about a new group of women, called previvors who upon learning about their genes took their destinies into their own hands. It was truly empowering.

Armed with information and my powerpoint presentation I met with Rosemary and had two vials of blood drawn. And then waited…

For three weeks we waited.

It was the longest three weeks of my life.

Source: Tattoo Johnny

Part 4: The Results… (coming)

Tagged as: BRCA, breast cancer, FORCE, genetic testing, Jessica Queller, Myriad, Pretty Is What Changes