Patient Sarah Conley is the subject of a documentary on young people with cancer. (photo by Neil Brake)
Young cancer patient’s story inspires film
Filmmakers Jeremy Carlson, left, and Colby Sands interview patient Sarah Conley while Connie Crawford Koonce, R.N., prepares her for chemotherapy. (photo by Neil Brake)
Just one year after graduating from Belmont University, Sarah Conley thought her life and career would unfold on a grand scale, with a great job and opportunities to become a music teacher and voice coach.
Instead she found herself suffering from extreme fatigue and a low-grade fever that lingered for weeks. “I could dismiss the fatigue because I was working a lot, but I had a gut instinct that something was wrong,” Conley said.
She endured several rounds of tests before a persistent physician found a large mass wrapped around Sarah's heart.
Following surgery by Eric Lambright, M.D., assistant professor of Thoracic Surgery, the diagnosis of non-Hodgkin lymphoma (NHL) was confirmed and she was referred to Madan Jagasia, M.D., M.S., assistant professor of Medicine, and director of the Outpatient Stem Cell Transplant Program at Vanderbilt-Ingram Cancer Center.
“Cancer didn't fit into my five-year plan,” said Conley. “At age 23 you have all of your dreams and plans in front of you. This has been a very sobering, humbling and frustrating experience.”
But this young patient from Mansfield, Texas, already had experience with a cancer diagnosis. By chance both of her parents were diagnosed with the same disease, in which malignant cells form in the lymph system. Her parents survived their bouts with this form of cancer, although her father had a recurrence of the disease. The National Cancer Institute (NCI) estimates there will be 63,190 new cases of this cancer of the immune system in the United States in 2007 and 18,660 patients will die from the disease.
Jagasia says it's rare to see a family cluster of patients with NHL because the disease is not thought to be genetic nor is it caused by a specific environmental trigger.
“The true cause of this disease is a big black box,” Jagasia explained. “It appears that something in the patient's genetic makeup, probably combined with some kind of environmental exposure, leads to the mutation that becomes cancer. We really don't understand the biological mechanisms of this disease very well.”
What researchers do know is that this form of cancer often strikes young patients. According to the NCI, lymphoma accounts for 20 percent of cancers in patients age 15 to 29.
“Sarah's case is unusual in that she has primary mediastinal large B-cell NHL,” explained Jagasia. “She had early stage disease and we expect her to do well with chemotherapy.”
Conley understands how rare her case is — only 2 percent of patients in this age range are diagnosed with cancer. So while she undergoes several rounds of chemotherapy, she has agreed to be the subject of a documentary about young adults with cancer. Filmmakers Jeremy Carlson and Colby Sands feel a kinship with their star because of their own tender years. Sands, who is only one year out of high school, has already shot several documentaries and Carlson is one of Sarah's co-workers. They all hope this documentary will raise awareness about young patients living with a cancer diagnosis.
“I've yet to see anyone even close to my age when I visit the cancer clinic for my chemo sessions,” explained Conley. “I've also done a lot of research and I discovered there have been tremendous strides in survival rates for children and older adults but for people my age the survival rates haven't improved in decades. Not enough people are screaming about this so I want to do whatever I can to raise awareness about young adults.”
A segment of the documentary was shown during a benefit concert at Belmont University to help cover Conley's medical bills. She also hopes to start a foundation called “How You Live,” dedicated to helping other young cancer patients. At the top of her list is lobbying for health insurance for people like her. While she had purchased a small policy to cover major medical expenses after graduation, she went through her college years without any health insurance coverage at all.
“At my age people just have this sense of invincibility,” she explained. “I'm proof that cancer can happen to anyone at any age.”