Moffitt Cancer Center surgeon Doug Letson has an enemy.
It’s the number 448.
That’s how many American children learn they have bone cancer each year, then face painful treatments, the risk of limb amputation and possible death.
It doesn’t matter that those children account for just 4 percent of the 11,210 annual pediatric cancer cases added each year or that they’re just a blip in the nearly 1.6 million new cancer cases that will be diagnosed in 2011.
Letson is drawn to them, especially the youngest patients, the ones the medical establishment usually says should have a cancerous arm or leg amputated instead of trying to save it.
Though endoprosthesis surgery — inserting a prosthetic under the skin — regularly is used to salvage the limbs of adult bone-cancer patients, the prevailing wisdom is that the risks are too great for a growing child.
“If you’re 16 we can save your leg, and if you’re 14 we’ve got to cut it off,” Letson said of the established standards. “It just doesn’t make any sense to me.”
Letson and Moffitt’s Sarcoma Program are openly challenging that position. In the past 18 years, they have implanted expandable chrome and titanium prosthetics into 50 young cancer patients.
It’s unpopular, difficult and expensive, but Letson said it leaves kids with little more than a scar to remember their cancer.
“We want to not only cure them of their cancer but make them more functional,” he said of the procedure, which he does in cooperation with All Children’s Hospital or Shriner’s Hospital for Children — Tampa. “We’re forgetting about the most important population we have: these children. Why can’t we do this in these children?”
The team’s first mission is helping a child survive. But like medical professionals in other rare, high-risk and high-cost fields, they push financial and scientific boundaries to offer children a normal life.
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Children such as Katie Karp, who competed in a school track meet the day before a searing pain started shooting through her leg. The 12-year-old Windermere girl thought it was a sprain.
Instead, an MRI found a tumor on her thigh bone. Within days, Katie was undergoing chemotherapy and was scheduled to have her thigh bone replaced with an experimental limb created in the United Kingdom.
That was 10 months ago. Letson implanted the prosthesis, an expandable bone designed to grow with a powerful magnet that pulls and twists the limb, eliminating the need for repeated surgeries.
Now 13, Katie is matter-of-fact about the monthly sessions that lengthen her leg about 1 centimeter at a time.
“So this is really cool because it’s painless,” she said. “You might be a little sore afterward because it’s like growing pains, but I never have them.”
Katie and her mother know that without the experimental surgery, activities such as horseback riding would be impossible. They’re also grateful they found the alternative treatment; they have watched two friends lose limbs to osteosarcoma in the past few months.
“Every child deserves to have as many options as possible,” Leslie Karp said.
The U.S. Food and Drug Administration this summer approved the femur salvage procedure, which Letson said can cost $20,000 to $30,000 per child. It took 15 years, but the approval is a significant step in persuading the medical community to change its standards, he said.
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The operating room sometimes is the first place Letson meets a patient. But relationships grow, as do the children he treats. He has danced at weddings and attended graduations of patients who were as young as 4 when he operated on them.
He has also said goodbye. The five-year survival rate of children with osteosarcoma and a similar condition called Ewing’s sarcoma is 65 percent to 70 percent, the American Cancer Society reports. Children with amputated limbs or an endoprosthesis face almost identical odds of survival.
But health care decisions regularly rely on hard numbers, not heartwarming stories, and a prosthesis is expensive.
Insurance company officials, whom Letson said traditionally look for front-end savings, can be reluctant to endorse an expensive prosthetic that doesn’t have a lifetime warranty.
“They’re like tires on your car,” Letson said of the devices. “Kids wear them out. They break them, just like anything else.”
So he has fought the critics with data. He and other advocates published studies calculating the long-term costs of expandable limbs.
They projected a patient’s need for replacements and care up to age 60, and found amputation ends up costing insurance companies more.
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Nine months ago, Josalyn Kaldenberg went from being the best rope climber in Woodward, Iowa, to pediatric cancer patient. Osteosarcoma had invaded her right upper arm, and doctors believed amputation was the 8-year-old’s best chance for survival.
Her mother, Heidi Kaldenberg, scoured the Internet for alternatives. Upper-arm prosthetics had been created for children in the United Kingdom, but not for those in the United States. Then she found Letson’s name and saw that he had done similar experimental procedures. She shared what she learned with her daughter’s oncologist.
Five days before the scheduled amputation, Letson said he would be able to do the surgery. Josalyn traveled 1,400 miles to undergo the surgery at Tampa’s Shriner’s Hospital. It was the first time an American surgeon replaced a child’s entire upper-arm bone with the expandable prosthesis.
Josalyn is back in Iowa, using her right arm to decorate coloring books with her brothers and sisters. Her final chemotherapy treatment is scheduled for next week.Her mother said instinct led her to look for alternatives to amputation, but it took medical professionals willing to wade through bureaucratic logistics to make the pioneering procedure a reality.
“It’s the difference of life and death for Josalyn,” Kaldenberg said. “In her case … she might not have an arm right now had they not gone and fought through the red tape.”
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The financial and scientific battles pediatric bone cancer advocates face is one tiny conflict in the nation’s gargantuan health care system. But it’s an example of the challenges doctors and patients will encounter in a future demanding dramatic cuts and changes to medical care.
Letson worries about a business and economic environment caught up in making sure medical care returns the “biggest bang for the buck.” When you’re talking with a patient, the only return on investment that matters is a person’s life, he said.
“We have to figure out ways to reduce this surging medical cost, but where?” he asked. “It shouldn’t be on the patient care side. We have to find new and better ways to reduce costs.”
Pediatric patients are not the ones most at risk in the political battles, Letson said. He also can see the establishment questioning the financial value of endoprosthetics in older patients. Treatment decisions should be made using evidence, not speculation, he said.
Once a week at Moffitt, Letson conducts rounds with medical students pursuing surgery. They review a group of cases, and he challenges the students to think smarter than those who performed the procedure.
Letson says he has a similar internal inquiry each time he sees one of the children he has operated on in the past 18 years. How much is he limping? How big is her scar?
He’s never satisfied with the answers. And he hopes he’s not the only one who feels that way.
“We’ve got a long ways to go,” he said. “We can do a lot better.”Tags: American Cancer Society, amputate, amputation, bone cancer, Doug Letson, endoprosthesis surgery, expandable prosthesis, Katie Karp, osteosarcoma, prosthesis