Is rare brain cancer rare in Iowa?

‘Your husband has brain cancer,” is never something you are prepared to hear. A year ago, our nightmare began. It was a single moment in time that instantly and immediately changed our young family forever. I took my husband, Stephen, to the ER with a migraine. We left with a scan showing a 5cm brain tumor. How could this be happening without obvious symptoms, being a non-smoker, young, active, and otherwise healthy? Soon, Stephen had a craniotomy. Upon pathology reports, we learned Stephen’s diagnosis of “Glioblastoma (GBM),” and his unfavorable biomarkers indicated we were on borrowed time.

GBM or grade 4 brain cancer is “rare.” It strikes three in 100,000 people, typically men in their mid-60s. There is no cure. Remission is never a thing. Stability is your hope. GBM feels like “worst-case scenario” and little still is known. In the last 50 years, GBM has only had five medicines and one medical device approved by the FDA; and with this decades old “standard of care treatment” — median survival is about one year. Long-term survivors make it two years. Only 5 percent will live for five years.

Brain cancer gives you “life or death” decisions. After surgery, Stephen endured six weeks of radiation with chemotherapy. He then attempted another four months of chemo, wore a medical device, and took painful infusions before recurrence. His cancer was growing despite trying all the treatments.

We also desperately searched to find clinical trials, reaching out across the world. Experimental research for GBM is like a lottery, it’s about timing, availability, biology, and luck. We never got the chance. We got 10 months before Stephen passed away.

Before Stephen’s diagnosis, we only knew one other family with brain cancer. We soon met another family fighting GBM about a mile away from us. Numerous people have since shared how they are impacted by brain cancer. It’s not uncommon I randomly and regularly meet strangers also sharing their journeys. Glioblastoma surrounds us.

Statistically, with Cedar Rapids’ population, there should only be a handful people here dealing with GBM. We know more than a few people. At a fundraiser in Marion, I read the names of others we fight for … listing over three dozen.

In February, The Gazette published a University of Iowa report showing Iowa to have the second-highest cancer rate in the nation. Quoting University of Iowa associate professor of epidemiology Mary Charlton, who directs the Iowa Cancer Registry, “(Iowa has) a relatively high rate of just about every major cancer … It's a lot of things collectively we need to do as a population.” Another health care professional personally theorized Iowa has the highest incidents for GBM rates.

GBM is supposed to be a “rare” cancer, but it isn’t feeling so rare. Are we doing everything we can to protect our community from brain cancer? What variables and risk factors can we control to help reduce cancer rates in Iowa?

Iowa can do better. We are not doing enough. Rates must change. Our community is in danger. More needs to be done before it is too late. Funds need allocated. Research and advancements are lacking. Treatment is behind. Patients are losing their lives. Cancer and Glioblastoma are winning.

One responsibility is to increase awareness of our cancer problem in Iowa. Another is raising funds to advance research and treatment. In honor of Stephen’s 38th birthday, on Aug. 26 we are hosting a “Burger and Beer Benefit.” Proceeds will benefit brain cancer research at the University of Iowa Center for Advancement. Tickets and details can be found at: www.thrivebraincancer.com/burger-beer-benefit.

Brittney Stepanek lives in Cedar Rapids.