It was July 2006 when Robert Couch began to experience a very strange sensation.

He was in the middle of restoring a Morgan sports car, which has been his passion (and his business) for decades, when “a wave of smells came over me,” Robert says. “It was like all the smells I’d ever smelled before, only a thousand times stronger than normal.”

He could walk and talk fine, but his wife took him to the emergency room anyway, where it was determined that Robert was having a seizure. A CT scan revealed the cause—a tumor in his temporal lobe.

Diagnosis

Robert can’t remember the five days after that visit to the ER, except for getting into an ambulance. It was nearly a week later when he learned he was at University of Washington Medical Center, where Dr. Alex Spence, UW Medicine neuro-oncologist, told him he had an anaplastic oligodendroglioma.

Oligodendrogliomas (“oligos” for short) begin in the brain cells called oligodendrocytes, which provide support around nerves by building a sheath of myelin and facilitating electrical nerve impulses.

Brain tumors come in grades, not stages. And there are only two different grades of oligodendroglial cancers—Grade II and Grade III. There is no Grade I.  The grade represents how the cells look under a microscope. Well-differentiated oligodendrogliomas are Grade II. These are slow-growing cancers that look like normal cells. Grade III Oligodendrogliomas are called anaplastic oligos. They grow more quickly and the cells look very different from normal cells. Robert’s was Grade III, an anaplastic oligodendroglioma.

Treating brains tumors isn’t simple and normally involves surgery. But surgery doesn’t guarantee a cure. Most patients have additional treatment, like radiation therapy and/or chemotherapy.

A genetic marker for oligos helps pathologists predict how a person will respond to treatment and give a general idea of what the overall prognosis may be. If a pathologist finds that an oligo tumor is missing a couple of specific chromosome arms (deletions), then these patients tend to do much better long-term after treatment, living beyond seven years, than people whose tumors have these chromosomes (are without the deletion) The average is just over two years for recurrence for people without the deletion. Robert’s tumor did have these chromosomes, and yet he has survived far past the average timeframe for patients with a similar situation.
 

“I tell all of my patients that tumors are as individualized as people are. They have the individual's unique DNA and we don’t know exactly how each tumor is going to respond to a given treatment,” says Dr. Daniel Silbergeld, neurosurgeon at UW Medical Center.

Treatment

Dr. Silbergeld surgically removed Robert’s tumor, but surgery isn’t enough to cure this type of cancer. Robert required seven weeks of radiation treatment followed by chemotherapy.

Thanks to SCCA’s Network Member program, Robert was able to receive his radiation treatment in his home town of Sequim at Olympic Medical Cancer Center followed by an oral chemotherapy with a drug called Temodar. 

“I did have some terrible headaches after the surgery for about a month,” Robert says. He also ended up with a few blood clots in his legs, which were treated and have not caused him any problems. Robert also experienced two side effects from the radiation therapy: short term memory loss and the loss of taste. “I lived on ice cream and pancakes for about four months until my taste buds recovered,” Robert says.

Recovery

“I remember the first MRI I had after my surgery, about four months afterward, and the doctor said, ‘it couldn’t be better,’” Robert recalls. “I had MRIs every two months for the next year and they were all as good as the last.”

Robert’s doctors told him to take stress out of his life. He needed a few years to get his brain back to normal after such extensive treatment. So he closed his Morgan renovation business and began to relax. “I guess I lost some of my old passions – I’ve lost my passion for working on cars – but I’ve gained new passions. I let the passion of my heart seize the moment.” Robert volunteers now for cancer fund raising events and tries to spread hope to others who have received a diagnosis similar to his.

He can’t multi-task the way he used to and he tends to become overwhelmed easily. Robert doesn’t know why he got a brain tumor. He believes that working with the chemicals surrounding automobile restoration could be responsible. But Dr. Silbergeld says there isn’t anything Robert did or should have done to avoid his brain tumor. It just is what it is.
 

“I never considered the fact that I could die from brain cancer,” Robert says. “Because, I never took my eyes off the face of hope, or of God.”