When I was first diagnosed with breast cancer and discussing chemotherapy with my first oncologist (yeah, I’ve had five, but who’s counting?), we talked about the Oncotype DX® Test. This test helps determine risk for distant recurrence in some early-stage, estrogen-positive breast cancers. It is used to help decide if a patient will benefit from chemotherapy or if hormone therapy will likely be enough. I wanted this test. However, my oncologist didn’t order it because it’s more commonly used for node negative cancers. I was not node negative. He said no matter what my number would be, he’d still be recommending chemo due to my unclear lymph nodes.
Still, I wanted to know my number. I was curious. In my mind, knowing my score would solidify my decision to go ahead with chemotherapy. Somehow if I knew my score was high, chemo would sound more doable, if that makes sense.
But of course, this wasn’t/isn’t how things work. The test was expensive and I didn’t push. (I probably would now). I still wish I knew my score. But… I do not.
Fast forward five years.
And there was another test I wanted, the Breast Cancer Index Test (BCI).
At my last oncology appointment a few months ago, I brought this test up with my oncologist. He didn’t know about it, but said he would research it for me and get back to me. I said I’d do the same.
This test is intended to help guide early stage, ER+ breast cancer patients in making the decision to continue or not with anti-hormonal therapy. Just like with the Oncotype DX test, your tumor is analyzed resulting in a score that helps determine if you are likely to benefit from five additional years of anti-hormonal therapy or not. Of course, there are no guarantees. This is just one more piece to the puzzle.
And it’s an important piece because while estrogen-positive breast cancers are not as likely to recur during the first five years as some more-aggressive-at-diagnosis cancers are, statistically, recurrence rates for ER+ cancers “catch up” with other types of cancers. In other words, the risk doesn’t disappear, not even many years down the road.
Of course, most of us know this, but having another tool that helps ascertain an individual’s risk based on her tumor’s biology, can help a patient decide what to do going forward after completing that first five years of anti-estrogen therapy.
My oncologist said yes, he would happily order this test for me. But surprise, surprise, this test is costly too. And only one company runs it, BioTheranostics, located in San Diego, CA. This, of course, was considered out of network by my insurance provider – way out.
After a lengthy phone consult with a rep from BioTheranostics who informed me of the cost ($5,400) and a rep from my insurance company, it was determined it could possibly be given in-network status if I was willing to jump through some hoops. And if my oncologist ordered it, of course.
I was willing. But due to timing issues and deductible issues, the cost was still too high. And yes, there are payment plans as explained to me by that rep, but payment plans don’t make the cost any less.
(Let’s just say when I got off the phone that day, I wasn’t happy and did a fair amount of cussing and crying).
To make a long story short, or at least shorter, I plan to revisit this at my next oncology appointment and get the ball rolling. Dear hubby and I are shuffling and planning and saving as we try to get this figured out before year’s end this time.
Regardless, my oncologist is recommending I continue on an AI. But just like that other time, knowing my score would solidify my decision to continue if it turned out to be high. If my score would turn out to be low, I wouldn’t necessarily stop taking an AI, but I might consider stopping before another five years go by depending on how my side effects are impacting my quality of life. It’s that whole knowledge is power concept again.
I hate it when things get complicated, not to mention expensive.
But such is the world of cancer. Such is the world of healthcare.
I will let you know if I do indeed end up getting this test.
As is so often the case, time will tell if I do or not.
And as always, I am sharing about the BCI test because I want others to know about this option too.
Important Note: As I finished up this post, I did some re-checking and it looks like this test is recommended for stage I and stage IIa invasive, ER+ breast cancers. I was IIb, so it’s likely I don’t qualify after all. How did I miss that? Sigh… Oh well, maybe this information will help some of you make your decisions.
Update to the above update: (May 2017) It appears I would qualify, after all. I’m not sure if guidelines have been changed or if I misread before. Looks like stage llb would qualify if 1-3 nodes are impacted. If you’re interested in this test and aren’t sure, give them a call.
Have you heard of the Breast Cancer Index Test?
If applicable, have you had this test, or do you plan to?
If applicable, did you have the Oncotype DX test?