So, You Tested Positive…

So I took the test.  It was very simple.  The genetic counselor sent me a test kit.  I spit into a test tube and sent it back to the testing company.  Then I waited. The genetic counselor told me it would take 2-3 weeks for the results to come in, and she would call me when she had them.

A lot of people worry obsessively while waiting for medical test results.  I understand that, but I’ve never been one of those people.  I take a test, whether a blood test, mammogram, ultrasound, whatever, and I put it behind me.  At some point the doctor will call and tell me the results, and I’ll deal with any news—good or bad—at that time. But there is no value to be gained by obsessing over a test where I have no idea of the outcome.  It’s a waste of psychic energy for me.  So I mailed back the test and put it out of my mind. 

About a week and a half into the wait, it did cross my mind—what if it’s positive?  I started to consider the ramifications of such a result—the implications for me and my family, decisions I would face, etc—and I became just a little bit nervous.  But I still didn’t think it would happen to me.

On a Wednesday morning—I was working from home due to COVID—the phone rang.  I saw from the caller ID that it was from Columbia-Presbyterian.  It was less than 2 weeks since I had mailed the test kit back, so I was surprised.  Was something wrong with the test kit?

It was the genetic counselor. “Hi Carol, it’s Carrie.  So I have your test results.”  OK.  She sounded very upbeat and perky, which was reassuring.

“So you tested positive for BRCA1.”

The world stopped.  I sat there, on a silent phone line, for what seemed like forever.  This wasn’t the way this was supposed to go.

We talked for a while more.  Or rather, she talked for a while more.  I pretended to listen to what she was saying about next steps, risks, percentages—but I could not tell you a thing she said.  After a while she said I was welcome to schedule another appointment with her to discuss the results in greater detail.  I said thank you, not right now, and hung up.

I know I went down to the basement to tell Evan, but I don’t remember that conversation at all.

I called my gynecologist.  I left a message for him to call me back about some test results.  He called me back within the hour.  It was the first of many in depth conversations I’ve had with Dr. K over the past several months. 

I’ve known Dr. K for 28 years.  He was a new associate at the practice I used when I was pregnant with Hannah, and happened to be on call when I went into labor.  We immediately clicked, and I’ve been his patient ever since.  When he leaves messages for me, he uses his first name.  My appointments are as much catching up as they are about the exams.

I told him my news.  He reviewed my results, and then he then shared with me that both his wife and 30-something daughter had a BRCA mutation.  I really appreciated his sharing that with me.  It demonstrated that he could relate to all of this both as a physician and as someone who is directly affected by it as well.

He immediately wrote me a scrip for a breast MRI, which I had never had, and provided me with the name of a gynecologic oncologist.  My journey was just beginning.