Benjamin’s Battle: Young man fighting rare cancer expresses concern for others | The Verde Independent

COTTONWOOD – Benjamin Peterson’s cancer is so rare he had more chance of winning a recent Power Ball lottery than getting follicular dendritic cell sarcoma.

“Fewer than 1,000 people worldwide have ever had it since its discovery in the mid-1980s,” his mother Celeste Peterson explained Monday.

Benjamin, an ASU student who wants to go to law school someday, calculated that the odds of getting FDCS is one in 304,347,826.

“Hopefully, we can pave the way for future FDCS patients to have a more established treatment plan that they can say has worked on thousands or hundreds of thousands of patients,” he said.

Because it is so rare, there is limited research on FDCS and it has to be treated like other traditional cancer treatments, Peterson said Monday.

The Mingus High School and Yavapai College graduate may be the only person in Arizona who has FDCS, Celeste said.

“Benjamin is quite gifted and wants to know everything about his condition,” she said.

Peterson’s life changed forever when he found a lump in his neck in April 2021. But it wasn’t until June when, at age 23, he was diagnosed with the “ultra-rare cancer,” Celeste said.

“(Benjamin} is a celebrity in the community,” she said. “People just don’t know it.”

Peterson said he has been contacted the Verde Independent to let people know: “It’s something people need to look out for.”

A lot of people wouldn’t treat it as an urgent matter, he said. The swelling, for example, is usually painless, but other symptoms are a sore throat, abdominal pain, sleepless nights and fever.

“Who would think, at this age, a young guy, a minor lump on the neck turns out to be a cancer? If we didn’t detect it, very well it would have killed me.”

“Don’t ignore minor stuff,” he said. “It’s probably nothing but that one-in-a-million times it’s not nothing; something needs to be done.”

From the time he detected it in April to the time doctors at the Mayo Clinic diagnosed the rare cancer in June, it grew to the size of a “golf ball,” his mom said.

Peterson has good days and bad days and was feeling well on Monday.

He was scheduled to see a new doctor at Banner MD Anderson on Tuesday for a new action plan. He has decided to treat the cancer aggressively with surgery, radiation and chemotherapy because of the lack of research about FDCS.

He has had two surgeries and radiation, but his chemo was shortened because of complications, Celeste said.

Peterson said doctors told him his cancer did not have metastatic growth.

But sarcoma cancers come back 48% of the time, so he said he wanted to treat this aggressively.

Even finding an oncologist to treat him took research, Celeste said. “Everything about treating cancer is experimental.”

And expensive, as it is requiring thousands of miles of travel and hotel stays. It has come with a high price financially, physically and emotionally, Celeste said.

Her husband, Brian, was diagnosed with Guillain-Barre syndrome from a flu shot he received.

“One in a million reactions to vaccines,” Benjamin pointed out.

“He’s completely disabled and legally blind,” Celeste said.

Celeste’s oldest son Adam Porter, who also graduated from Mingus Union High School, does not live with them but they support him, she said. He has a severe form of spina bifida and is a paraplegic in a wheelchair.

Benjamin’s “little brother” Brigham is an EMT student at Yavapai College, a Jerome volunteer firefighter, and works at a restaurant in Sedona, she said.

“He is trying to hold everything together,” said Celeste, who has multiple sclerosis. Brigham works, goes to school and “does everything that we can’t do because of our circumstances.”

Their family friend did have a small fundraising event at a local restaurant recently and is their gofundme page.

His mother said “nothing is known for sure, but he’s bravely moving forward.”

His days can be tough, nights can be long and fears can be overwhelming at times. However, he continues to optimistically look forward to his future.”

“His goal is to warn others to pay attention to what might otherwise be overlooked,” Celeste Peterson said. Everyone should be cancer aware.”

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