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Patient Stories

One Week at a Time: Father Battles Rare Cancer

Axel’s head and neck cancer treatment

Axel Andersson thought he just had a stuffy nose. It turned out, he had a rare and life-threatening cancer that had grown into his brain.

It was the fall of the year, and his kids were 4 and 6 years old, so initially Axel waved off his symptoms thinking he had a cold. But when his stuffy nose didn’t improve, he went to Urgent Care. A caregiver told him it was probably nothing and to come back in two weeks if there was no improvement.

But Axel had a growing sense that something wasn’t quite right, and he developed some new symptoms, so he sought another opinion from Landon J. Duyka, MD, a Northwestern Medical Group otolaryngologist (ENT) in Chicago’s north suburbs.

“I thought if it turned out to be something bad, I wanted to be in a good place from the get-go,” he says about choosing Northwestern Medicine. To his surprise, Axel was able to get an appointment with Dr. Duyka the next day.

Cancer Confirmed

Dr. Duyka took Axel’s concerns seriously and ordered imaging to see what was causing his symptoms. Imaging showed that Axel had a tumor in his nasal cavity — and it was growing into his brain. Dr. Duyka performed a biopsy and confirmed the worst — Axel had sinonasal undifferentiated carcinoma: cancer.

“That was a very low point. He confirmed the worst,” Axel recalls. “And I had two small kids.”

Another series of imaging was ordered to assess how much the cancer had spread. His cancer had spread to the lymph nodes in both sides of his neck, a bad sign for cancer starting at the skull base, but fortunately no cancer had spread below the neck into his lungs. Dr. Duyka told Axel that the cancer could be treated and that treatment could significantly extend his life. Axel was concerned about the quality of life during and after what he knew would be intense treatment that would involve surgery, chemotherapy and radiation. But in the end, he knew he needed to fight back.

Selecting the right care team was crucial for Axel, who pursued multiple opinions and researched his options. He consulted with other physicians outside of Northwestern Medicine who pointed him back to Sandeep Samant, MD, director of the Head and Neck Multidisciplinary Clinic at Northwestern Memorial Hospital. Axel knew his unique diagnosis would require a team approach to care, and he liked the fact that the Head and Neck clinic conducted weekly tumor boards that allow a variety of specialists to share advice and ideas on treatment approaches.

The Head and Neck Multidisciplinary Clinic is one of just a few in the Midwest dedicated to treating patients with head and neck cancer. Patients have access to a variety of highly experienced specialists all in one location, improving patient experience, enabling close collaboration among teams and enhancing quality of care.

“At the clinic, we can identify the cancer, characterize it, and collaborate with experts across multiple disciplines to choose the best treatment path,” says Dr. Samant. “Through this multidisciplinary approach, we are enhancing quality of care and the patient experience.”

Although Axel had considered seeing other surgeons in other parts of the country, he is glad he ultimately chose to get care close to home. “I know I made the right decision,” he says. “It would be really hard to not have family around during treatment.”

The Team Comes Together

Axel’s first treatment was delivered by Mark Agulnik, MD, Northwestern Medical Group hematology and medical oncology specialist, who administered chemotherapy to shrink the extensive tumor at the base of skull to facilitate surgery.

After two weeks of recovery following chemotherapy, Axel underwent his first surgery with Dr. Samant to remove the lymph nodes in both sides of his neck. The next day, Axel underwent another surgery, this time a combined approach with Dr. Samant and Northwestern Medical Group Neurosurgeon James P. Chandler, MD, to remove the cancer in his sinuses, orbital cavity and base of the brain. After initial chemotherapy and back-to-back surgeries, nearly 99 percent of the cancer cells were eliminated.

But the pathology report on the tissue the surgeons removed was concerning. Axel had squamous cell carcinoma in addition to a component of sinonasal undifferentiated carcinoma. His situation was extremely rare.

“I won the wrong lottery,” Axel says.

Axel had four weeks to recover from the two surgeries before resuming chemotherapy and beginning daily high-dose radiation treatment under the direction of Northwestern Medical Group Radiation Oncologist Timothy J. Kruser, MD, to destroy the remaining cancer cells.

Axel’s father drove him to his daily radiation appointments. He endured 35 days of treatment — five days a week for seven weeks — and side effects mounted. To get through it, Axel took it one week at a time.

Axel says he once read about a man who climbed Mount Everest. Starving for oxygen in the high altitude, the climber talked about getting to the summit just 10 steps at a time. “It’s the only goal you have,” Axel relates. “You take 10 steps. Then you take 10 steps more.” So each week, his goal was to get through just one more week. “That’s what I was thinking: ‘I’m going to do one week at a time.’ That’s how I mentally got through it.”

Two Years Cancer-Free

Treatment, Axel says, was only half the battle. Once his radiation and chemotherapy were done, the uncertainty set in. “How well did it work?” he wondered. He spent his time waiting and healing, and slowly finding his new normal. After missing seven months of work, Axel eased back in to his full-time management job, grateful for the colleagues who encouraged him and welcomed him back when he was ready.

Axel is also very grateful for his wife, acknowledging all that she endured. “During treatment, I spent most of my time in the bedroom trying to get through the day. She had to take care of everything,” he explains. “She was amazing.”

It has been a long road and Axel’s journey continues, but one week at a time, two years have now passed, and regular scans confirm that Axel remains cancer-free. He has lingering side effects from the surgery and intense treatment he endured, but “those are small things,” he says. “I’m fortunate to have a family and kids, and I appreciate them every day.”