If you received a brain cancer diagnosis more than two years ago – like I did – you might as well have been diagnosed in the stone age.

That’s right, everything us longer-term survivors think we know about our tumor is (likely) wrong and completely misleading.

Does the grade of your brain tumor even matter?

New research published in the New England Journal of Medicine (NEJM) has shown that using just three molecular markers will help clinicians classify gliomas – the most common type of malignant brain tumors – more accurately than current methods.

The research, performed by a team of scientists at University of California, San Francisco and the Mayo Clinic, shows that treatment for gliomas can’t be based on grading alone.

Standard treatment as I knew it was based on the grade of tumor, e.g., grade 2, grade 3, grade 4 (aka glioblastoma). The grading system is determined by the way a tumor appears to the naked eye under a microscope. After reading the NEJM article, that standard now seems a bit rudimentary and may potentially be thrown out the window.

Now, with the ability to sequence the genomes of brain tumors, “researchers report that, based on the presence or absence of (genetic markers), 95 percent of gliomas fall into one of five distinct groups, which vary in terms of median survival times and other characteristics.”

Yeah, science!

According to a UCSF news release:

The scientists found that among grade II and III tumors, 29 percent were “triple positive,” showing all three markers. Patients with these tumors had a median survival time of 13.1 years. Five percent had both TERT and IDH mutations, and had a median survival time similar to triple positive tumors. Forty-five percent had IDH mutation only, and a median survival time of 8.9 years. Seven percent of tumors were triple negative, with none of the mutations, and had a median survival time of 6.2 years. The 10 percent of tumors that only had the TERT mutation were associated with the shortest median survival time – 1.9 years.

And if you have a glioblastoma, there’s news for you as well:

The researchers found that among patients with grade IV tumors, age at diagnosis was a more important predictor of survival than molecular subgroup, with younger patients having a better chance of surviving longer than older patients.

Is it too late to sequence the genome of my brain tumor?

The World Health Organization is shaking things up, too

On a recent trip to Washington, DC, where I participated in lobbying activities with the National Brain Tumor Society, I had an interesting conversation with David Arons, the organization’s director of public policy. David told me that the World Health Organization (WHO) – the international body that provides leadership on issues impacting the health of our global population – would be conducting an audit on brain tumors this year which may lead to reclassification.

In case you don’t know if the WHO is a big deal, let me put it this way: When you are told that you have a WHO grade II, III or IV brain tumor, the “WHO” stands for the World Health Organization. The WHO is integral to the identity of how you are categorized as a patient and how you have received treatment thus far.

What can a patient do?

Advances in science are awesome, and I for one am totally stoked about what we will learn about our tumors in the next few years.

From time to time I scan the brain tumor communities that have popped up on Facebook (like this one or this one). There are many newly diagnosed patients asking questions about the genome markers associated with their brain tumors and I really had no idea what they were talking about.

I have to admit, as a longer term survivor, I feel a bit left out. I did not receive fancy genome sequencing when I was first diagnosed. And I did not get fancy genome sequencing when I was re-diagnosed after my tumor grew back roughly four months later. You would think, after reading about these new findings, I would be placed in that more aggressive category of grade II glioma patients.

Knowing all of this I am going to contact my medical team and ask if I can get the data that was collected about my tumor when it was sent to UCLA for a research project. Perhaps they know something?

I am also going to stay tuned to the findings from the WHO reclassification study and see if new news comes out for the gemistocytic astrocytoma population.

If I was a patient getting diagnosed today I would make sure I was being treated at a medical facility that could sequence the genome of my tumor in order to find out what type of treatment I should be receiving. If my local hospital could not perform this type of high-level activity, I would seek a second opinion just for the sake of knowing what I truly have in my head. From there I could go back to my local hospital with that data and use it to receive the right care.

Remember to advocate for yourselves! You deserve answers.

Now go be awesome.