A Family’s Quest
Determination to find answers to mystifying cancer leads to Discovery Grant in husband’s memory
- By Cynthia Floyd Manley | Photography by David Hills
Ardythe and Frank Jones were man and wife for more than 50 years. They enjoyed two children, four grandchildren, and life on the road in their RV, touring the country together.
They also both faced cancer less than a year apart, but their experiences were as different as night and day.
When Ardythe was diagnosed with breast cancer in 2005, she was presented with mountains of information, lists of resources, and
perhaps most importantly, optimism and hope. When Frank learned he had cancer in 2006, there was little information. Few resources. No hope.
“When we went back to our oncologist after Frank’s surgery, he said, ‘what I tell people in this situation is to get their financial affairs in order,’” Ardythe recalls. “They automatically put you in a box for death and that’s the end of it.”
Why the difference?
The tumor growing around Frank’s spinal cord was diagnosed as “cancer of unknown primary,” or CUP. It had spread from an original (primary) tumor somewhere else in his body, a tumor that was never found or identified.
The key to understanding CUP is to understand first how cancer often develops and spreads. Abnormal cells grow and cancer begins in one kind of tissue; this first tumor is called the “primary site.” One characteristic of cancer is that the cells have the ability to spread and begin to grow in other distant parts of the body (metastasis). These “metastases” are still the same type of cancer as the original tumor. For example, a cancer that starts as a breast tumor but spreads as tumors in the bones or brain is still a breast cancer, and is treated as such. Treatment that is specific to the type of cancer is likely to be most effective.
However, sometimes a tumor’s location and what it looks like under the microscope suggest that it began somewhere else. The pattern of spread, what the cancer looks like, a patient’s personal or family history, and other factors may offer clues to the tumor’s origin. The National Cancer Institute estimates that 2 percent to 4 percent of patients have a cancer for which the site of origin is never found. That adds up to as many as 56,000 of the 1.4 million Americans expected to be diagnosed with cancer in 2008. While dwarfed by the 213,000 who will develop lung cancer or the 180,000 who will develop breast cancer, it is similar to the number of patients who develop kidney cancer or melanoma – “still a lot of people,” Ardythe says.
Among those affected by this devastating diagnosis was businessman and philanthropist E. Bronson Ingram, namesake of the Vanderbilt-Ingram Cancer Center, who died of CUP in 1995.
The underlying mystery and the paucity of effective treatment options make it a diagnosis all the more frightening and maddening for patients and families.
“When I went to the library for information about breast cancer, there were shelves and shelves of it,” Ardythe says. “When I went to the library to learn about cancer of unknown primary, I found mention of it in the index of a few medical books, and that led to only a few paragraphs.”
Ardythe and Frank weren’t ready to accept the grim prognosis. They went to a well-known cancer center for a consultation. There, doctors recommended a particular treatment and used a tumor in Frank’s jaw as a “marker” for whether it was effective. After three
sessions, the tumor had grown. It wasn’t working. Nearly three dozen radiation treatments to the jaw followed. The side effects from the radiation were the worst of all, Ardythe says.
“Next, they did a complete bone scan,” she recalls. “There were tumors everywhere. Now there really was no hope. One night, the bone in his arm cracked as he lay down in bed. Any other bone could break at any time. We were terrified.”
The family called hospice. “With the wonderful help of our children, Cheryl and Tim, we were able to keep Frank at home,” Ardythe says.
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