Go Big or Go Home

Anyone who knows me patiently embraces the fact that I am an overachiever of the highest order.  I was devastated to graduate with a 3.998 (I got an A- in a one-credit practice class.  One credit.  Seriously, you couldn't have just nudged that up to an A?  No 4.0 for me).  I typically make hundreds of dozens of baked goods during the holidays to give as gifts.  I designed and hand-made the trusses for the garden shed in our backyard.  I walk through stores and say, “I can make that” with regularity and alarming frequency.

So it would stand to reason that I would inevitably Go Big or Go Home with regard to my breast cancer, too.

While we met with the hematology oncologist a week ago and explored my treatment plan, there was still some “wiggle room” for me to make a decision as to whether I really wanted to do chemo.  Not really, but I like to think I had some choice in the matter.  The doctor “strongly suggested” chemo, but continued to tell me it was my decision (affirmed by his use of graphs and charts labeled, “Team Decision Making”).

Last Thursday, however, the decision was made for me.  

We have been waiting for the results of that One Last Test – the Onctotype DX score.  This test examines 21 genes in the tumor and spits out what they call the “recurrence score,” which represents two distinct aspects of the tumor/cancer:  the chance of “distant recurrence” (or metastasis), as well as my benefit of chemo in treatment.  As I explained in an earlier post, a recurrence score of 18 or less suggests there is a low risk of recurrence, and the benefit of chemotherapy is likely to be small and will not outweigh the risks of side effects.  A recurrence score between 18 and 31 suggests an “intermediate” risk of recurrence. It’s unclear whether the benefits of chemotherapy outweigh the risks of side effects.  And lastly, a recurrence score of greater than 31 means there is a high risk of recurrence, and the benefits of chemotherapy are likely to be greater than the risks of side effects.

My score is 42.  My chance of recurrence, without any additional treatment, is 28% in ten years. 

It is easy to confuse the two numbers – 42 and 28 – especially when the first score is called a “recurrence score”.  It makes it sound as if there is a 42% chance of recurrence.  That is not the case.  But when you're getting this information over the phone, from a doctor you've never met, who accidentally lets slip, "I've never seen a score that high before," it tends to make you feel pretty fatalistic.

Because of the Oncotype score, treatment options have changed.  The aggressive nature of the cancer means a more aggressive approach to chemo.  Whereas before I would be doing 4 to 6 rounds (or treatments) of two drugs, I will now be doing 4 rounds of one drug (once a week, every two weeks), followed by 12 rounds of two different drugs.  I have the opportunity to take part in a clinical trial that would alter the way medication is administered, but would not change the medication itself.  It's something to think about.

It was not an easy score to hear.  It means no opportunity for delivery of chemo through an IV; I'll be having a port put in this week.  It means a longer treatment period.  It means I will likely be sicker, crankier, and just generally more unpleasant to be around.  It means at some point I may have to rethink things like school or work - maybe.  It's the unknown that's the most difficult to deal with right now.

But it doesn't change the fact that I'm still Stage 1, which is very good.  I still don't have any lymph node involvement, which is fantastic.  This stupid score doesn't change what is, it simply changes what could be - and we're going to fight that future with every big gun we can get our hands on.  Time to lock and load, baby.

I think Ken's Chrismukah gift to me - to us - says it all: