God’s Little Beta Tester

Sometimes I think that my role in this lifetime is to experience stuff that’s not always easy, so that I can share my learnings and maybe spare someone else a little bit of pain. I don’t mean that as a complaint at all.  Someone needs to beta test stuff.  It’s how we learn what works, and what doesn't.

I thought I would share a little story of what happened to me yesterday when I had to teach a lesson to some nice women that work in a doctor’s office.  I hope they enjoyed it as much as I did…

So back when I was diagnosed, I got tested for BRCA, which is a gene that exists in a small amount of the population and increases the carrier’s risk of breast and ovarian cancer to something like 85% probability.  Five years ago, insurance companies were not always willing to pay the $3500 testing fee, and so I elected to get tested for a variant that is more common among women of Eastern European Jewish ancestry.  The test was less expensive and if I tested negative for that variant, the chance that I had BRCA 1 or BRCA 2 was then lower than the general population.  I was negative.

Fast forward five years.  My gynecologist, a great doctor and a lovely woman felt very strongly that I should get tested for BRCA 1 and 2 because it would be better to know one way or the other.  I agreed, they took my blood, told me we would have results in 2-3 weeks and sent me on my way.

Two weeks later I get a message from her office that I need to call them.  Now, keep in mind that this office has a strict policy that they release test results online, via a message in your patient profile.  Like any cancer survivor, or person that has gotten bad news from a doctor, I got a bit nervous.  When I called I was told I needed to make an appointment to come in and get my results for my BRCA test.  My heart sank.  A positive BRCA test for me would likely mean having my ovaries removed and having a double mastectomy.  Then they told me that they couldn’t get me in for several days.

That’s when I kind of lost it.  I begged them to have the doctor call me and tell me my results over the phone.  They refused.  I told them that for me, waiting to hear bad news is worse than actually hearing it.  They said, no, that’s our policy.  I was pretty distraught.

That’s when they said, “Oh, just so you know, everyone comes in for their results, positive or negative.   So, just because we want you to come in, it doesn’t mean you are positive.”

And that’s when I really lost it.  I said, “Let me give you a little advice from a cancer survivor.  The time to tell the patient that EVERYONE has to come in to get their results is when you draw their blood, not when they are crying and begging you to spare them the agony of waiting for their bad news.”

Crickets….and then, “I am so sorry, you are absolutely right, and I am going to have the nurse call you today and give you your results, but you still have to come in for your appointment.”  Fair enough.

The nurse called.  I am negative yet again.  And God’s little beta tester has completed another small mission in helping the medical profession humanize the cancer experience.