Rhabdomyosarcoma Survivor: Alex's Story

The odds were squarely against Alex Potter. Diagnosed at age 10 with a type of cancer known as metastatic nasopharyngeal rhabdomyosarcoma, Alex faced a grim 10 to 15 percent chance of survival.

Alex "The whole world started caving in," he says. "It was scary."

Life shifted from baseball and Cub Scouts to surgery, chemotherapy and radiation. With a determined will, a supportive family and maybe a touch of luck, Alex defied the odds: He beat cancer.

Now 24, Alex has the kind of life he and his family were once afraid to dream about. He's a graduate of Saint Joseph's University and has a job he loves in the healthcare field. To most people, that would be the triumphant end of the story. But the radiation and chemotherapy treatments used to combat cancer inevitably damage healthy cells too. For many childhood cancer survivors like Alex, life after cancer presents a whole new series of challenges. 

That's where the Cancer Center's pioneering Cancer Survivorship Program comes in. The first program of its kind in the nation, it has been caring for childhood cancer survivors for more than a quarter century, helping them through issues that can include heart abnormalities, hormone imbalances, lung problems, learning difficulties, depression, and post-traumatic stress, among others.

When Alex was diagnosed with cancer, he already had tumors in his neck, spine and lung. The radiation that saved his life left his esophagus damaged, making it difficult for him to swallow food. He worked with a nutritionist at the Cancer Center's Multidisciplinary Cancer Survivorship Clinic to find foods he can eat.  The clinic also helped refer him to the right doctor to gently stretch his narrowed espophagus. 

He also takes a handful of pills every day for heart and thyroid problems, and in addition to the Clinic's nutritionist, he  was seen by the clinic’s cardiologist and endocrinologist, as well as other subspecialists. When he had his wisdom teeth removed in 2008, he had to spend 2 1/2 hours in an oxygen chamber every day for the 20 days before the surgery to strengthen his jaw bone.

Before the Multidisciplinary Clinic opened in 2005, survivors like Alex typically juggled a series of visits with a whole array of subspecialists. But now, at the monthly Survivorship Clinic, the subspecialists come to them in one clinic visit. 
Kids and families were missing days from school and from work, trying to coordinate their complex medical needs," says Jill Ginsberg, MD, director of the Cancer Survivorship Program. "With this clinic and the coordination of appointments and a dedicated group of subspecialists, the care has been so much more seamless."

"It just makes it so much easier," Alex agrees.

Alex remains resolute in his fight against cancer, participating in the Four Season's Parkway Run and Walk, one of the Cancer Center's signature fundraising events, held every autumn for the past decade. It's a way to give back to the nurses and doctors and the Cancer Center, who are like family to him.

Now that Alex is a young adult, the Cancer Center’s survivorship team has worked with him to transition care to Living Well After Cancer at the Hospital of the University of Pennsylvania and to multiple adult subspecialists. While he is no longer seen regularly at CHOP, he knows that the Survivorship team is never more than a phone call away.   

"They care so much," he says. "Just knowing they're there if I need something or have a question about something ... it's great peace of mind to know that you have that."