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Brain cancer survivor beats the odds after insisting on scan: 'Be your best advocate'

Glioblastoma is an aggressive fast-growing brain cancer that comes with a grim prognosis, but there is hope.
Steve Adams Jr. shares a happy moment with his 1-year-old son who was born two years after his dad's brain cancer diagnosis.
Steve Adams Jr. shares a happy moment with his 1-year-old son who was born two years after his dad's brain cancer diagnosis.Steven Adams
/ Source: TODAY

First came the dizzy spells. Then Steve Adams Jr. started sensing “weird smells” like sulfur that weren’t actually there. He also felt numbness in the back of his head and neck, and suddenly started needing glasses to drive.

For about a year, he complained to one primary care doctor and then another. Each ordered basic blood work that always came back normal. One physician told Adams the symptoms were probably due to stress and anxiety, and sent him to a psychologist who gave him mood stabilizers.

“I was just getting frustrated because I kept going back to them, telling them my situation,” Adams, 34, who lives in Hudson, New Hampshire, told TODAY.

But when an excruciating headache struck as he took his daughter to a trampoline park in August 2017, he pushed for more tests.

“Steve had to be his own advocate and really argue to get a scan. He said, ‘Something doesn’t feel right, I want my head scanned,’” his wife Gillian recalled.

The CT scan revealed a mass so large that an ambulance rushed Adams straight to a local hospital and then onto a medical center in Boston. Doctors there were shocked he was still walking, talking, driving and living a relatively normal life up until that point, the couple said.

The diagnosis: Glioblastoma, an aggressive fast-growing brain cancer that comes with a grim prognosis — most patients survive only 12 to 18 months, according to the National Brain Tumor Society. It can strike anyone, at any age, and can affect cognition, mood, behavior and every function of the body. Treatment is difficult since glioblastoma grows tentacles into the brain rather than forming a solid mass that doctors can target and remove.

But there are survivors like Adams who are offering hope by beating the odds. Three years after his diagnosis, he’s “feeling great,” he said. Doctors removed as much of the cancer as possible during surgery, and he received radiation and chemotherapy. Adams’ tumor has a certain mutation — called IDH-1 — that makes it more responsive to treatment.

The family includes, from left to right, Steve Adams Jr., his wife Gillian, their 14-year old daughter and 1-year-old son.Courtesy Steve Adams Jr.

Adams still lives with remnants of the growth, so his brain is regularly monitored with scans. He also wears Optune — a cap-like device that sends a low-dose electrical current through the brain — 22 hours a day to try to slow the growth of any remaining tumor cells, his wife said.

The dizzy spells and weird smells have gone away, though they can occasionally return when Adams overexerts himself. He was able to return to work a year after his brain surgery, joining his employer’s sales department rather than staying in the warehouse because of a seizure risk. He’s currently furloughed because of the pandemic, but said the support of his company has been a huge factor in life returning to normal.

Since the couple was trying to have a baby when Adams was suddenly diagnosed, doctors suggested sperm banking before he began chemotherapy and radiation. Last year, the couple welcomed a baby son thanks to IVF. They’ve also bought a new townhouse.

Adams has assembled a support team of family and friends, which he named SexySteveStrong "because when I woke up from surgery, the nurse asked me my name and I said 'sexy Steve,' and I am strong because of what I am going through now," he explained.Courtesy Steve Adams Jr.

The family is determined to make the most of every moment, regardless of the prognosis.

“(Doctors) said it could be one to five years, it could be 10 years — we just don’t know because these types of tumors have a very odd way of behaving. It can be stable for so long then all of a sudden something will happen and it will suddenly start to rapidly grow,” Gillian noted.

“Always stay positive,” Adams advised other glioblastoma patients. “That’s the whole thing in my mind — I always have a smile on my face. Use your support teams — family, friends. Don’t be afraid to ask questions of what’s going on with you. Be your best advocate.”