Olfactory neuroblastoma didn’t stop this survivor from achieving his goals

When Justin Masse was diagnosed with a type of skull base tumor called olfactory neuroblastoma, he wanted to learn everything about this rare cancer. He read every article he could find and joined a Facebook group for people with the same diagnosis.

His symptoms started one morning when he woke up, unable to breathe out of one of his nostrils. When a week of steroids and antibiotics didn’t help, he visited an ENT, who said it was nasal polyps. After a minor surgery, Justin was able to breathe again. But when he got a call from his ENT late on a Friday, he knew something was wrong.

“They’d sent my tissue samples to pathology as a precaution, and the preliminary results weren’t good,” he recalls.

He received his official diagnosis that Monday.

“The head and neck specialist I was referred to wasn’t sure at first if they could do surgery to remove my tumor, but all the articles I’d read said that you need surgery to have a good prognosis,” says Justin, who lived in Florida at the time.

So, he posted in the Facebook group asking if anyone had had surgery. Several people responded, saying that they had seen head and neck surgeon Ehab Hanna, M.D., at MD Anderson.

“As I continued researching, Dr. Hanna’s name kept coming up as one of the top specialists in the world for olfactory neuroblastoma,” recalls Justin. “They said MD Anderson doctors work closely together to treat you, and Dr. Hanna is the go-to guy if you want the best outcome. So, I called MD Anderson to make an appointment.”

He flew to Houston to start treatment a few weeks later.

Olfactory neuroblastoma treatment at MD Anderson

Justin was 32 at the time of his diagnosis. His wife, who was pregnant with the couple’s third child, stayed in Florida while Justin met with his MD Anderson care team, which included Hanna and neurosurgeon Shaan Raza, M.D.

“Dr. Hanna and Dr. Raza told me they were confident they could do the surgery to remove my tumor and explained everything to me,” Justin recalls. “Hearing a ‘yes’ from the beginning from the doctors at MD Anderson was really nice, and that made me feel better.”

On Oct. 30, 2023, Justin had a 10-hour surgery to remove the tumor. In December, he began six weeks of radiation therapy under radiation oncologist Clifton Fuller, M.D., Ph.D.

The radiation caused fatigue, hair loss, throat and mouth pain and difficulty eating and sleeping.  

“I was tired all the time, but I was also being lazy,” says Justin. “My family was in the process of moving from Florida back to Missouri, so I was in Houston by myself. I’d fly home every two weeks for a weekend and on holidays. Most days, I was in Houston alone.”

Finding the will to compete

Justin was training for a powerlifting competition before his cancer diagnosis. So, he got a membership at a local gym during radiation treatment to see if he could ease back into working out. But due to fatigue, he was only able to go to the gym a couple of times.

“Honestly, it was kind of demoralizing at first because I had been really strong and fit before, and now I could barely do anything in the gym,” Justin recalls.

But he persisted and by the end of February, he was going to the gym 2 or 3 days a week for 30 to 40 minutes.

“I knew that the only thing that would help me feel better was to get up and move,” he says.

By May 2024, all of the radiation side effects were gone except for a small part of his beard that didn’t grow back.

“I was feeling healthy, and my wife had just given birth to our child,” he says. “I signed up for a powerlifting competition at the end of the year and gave myself a goal of getting to as strong as I was before cancer – maybe even stronger.”

Fueled by motivation, Justin powered through the competition.

“I surpassed all the goals I had for that year,” he says. “I think that baseline of being active, healthy and strong before cancer really helped me.”

A new perspective after olfactory neuroblastoma treatment

Justin comes to MD Anderson for follow-up scans every four months. If all continues to go well, he’ll move to every six months next year.

“Cancer definitely put things into perspective for me,” he says. “It doesn’t matter how healthy you are or what you do to prevent cancer. Sometimes, you can just be diagnosed with a rare cancer.”

 Justin offers two tips for other young adults facing a cancer diagnosis.

“First, do your research. It’s hard to know what to ask your doctors or what to expect if you don’t research the cancer yourself,” he says. “Second, find a community of people who have the same diagnosis, so you can ask them questions.”

Justin enjoys connecting with people through MD Anderson’s Adolescent and Young Adult Facebook group.

“I share my story in hopes of inspiring others,” he says. “And I’ve met people who live close to my family, have young kids and are finishing up cancer treatment. We’re all friends now and plan to meet up this summer.”     

Justin encountered people of all ages in different stages of treatment at MD Anderson. He now encourages people to take control of their health and keep up with their cancer screenings, especially for prostate cancer and breast cancer.

“Olfactory neuroblastoma is kind of a sneaky cancer; if it recurs, it’s typically not until years later,” says Justin. “It’s something I’ll monitor for the rest of my life. But I know there are great treatment options, and I have the best doctors if it does ever pop up again.”

Request an appointment at MD Anderson online or call 1-833-607-1320.