Pain in woman's ribs was all too real
Tuesday, May 25, 2010
After more than a year, Jan Weymouth had stopped believing what doctors kept telling her: that the severe pain in her rib cage was the result of a muscle she pulled learning to play golf.
For starters, the veteran manager at the National Institutes of Health Clinical Center had not picked up a club in months -- so why hadn't the muscle healed? Maybe, she thought, the pain was related to coughing spells from increasingly frequent bouts of bronchitis. Perhaps it had something to do with the long days she spent at work, her recent 60-pound weight gain, or stress from the $13 million project she was spearheading: a residence at NIH for patients and their families.
Neither the orthopedists nor the rheumatologist she consulted as the rib pain worsened seemed concerned. Weymouth had even drawn the rheumatologist a picture, showing him exactly where her pain was located, and strongly requesting a CT or MRI scan.
"I wouldn't even know where to begin to scan," he told her, before scribbling a prescription for pain medication. "We're not miracle workers."
In July 2005, four months after that encounter, a preoperative exam for unrelated surgery revealed the shocking reason for Weymouth's pain, which was located in the spot she had pinpointed on her diagram.
"Initially I was furious, but then I was thankful," she recalled. "I had a lot of years before I knew I was sick."
Doctors cannot say for sure when Weymouth's problem began; it might have been simmering for years. Starting in 2000, she began contracting one bout of bronchitis after another.
"It seemed like I was sick every other month," said Weymouth, 61, who has retired from NIH after 35 years and now lives in Rehoboth Beach, Del., with her husband.
For as long as she could remember, her lungs had been her weak spot. In 1978 the lower lobe of her right lung had been removed after a serious infection failed to clear up. Two decades later, she was told she had developed asthma.
Weymouth's pulmonologist attributed the recurrent bronchitis to asthma and treated her with steroids, which helped -- for a while. "Then I'd be sick again in six to eight weeks," she said.
In December 2003, she became aware of a sharp pain on the left side of her rib cage. Weymouth had been taking golf lessons so she could play with her husband and figured she might have pulled a muscle. But after a few months when the pain worsened, she consulted the first orthopedist, who took an X-ray and told her it was normal. He suggested she might have torn a muscle and sent her to physical therapy.
Physical therapy made the pain worse; to cope, Weymouth gobbled over-the-counter pain relievers and tried to be patient. But by fall 2004, after several return trips to the first orthopedist and then a second, both of whom recommended physical therapy, Weymouth decided to see a rheumatologist. Maybe, she thought, the problem wasn't orthopedic but signified arthritis or another joint problem.
The rheumatologist seemed stumped. He couldn't find anything and also suggested physical therapy, a recommendation Weymouth had no intention of following.
During an appointment in March 2005, Weymouth drew the doctor a picture. He refused to order an imaging test, and his dismissive tone made it clear he thought she was a hypochondriac.
"I walked out of there and said, 'I'm done,' " she recalled. "I'm not fond of doctors and I'm not a chronic complainer. I was really angry."
She was also swamped with her responsibilities as the executive director of the Edmond J. Safra Family Lodge at NIH, a temporary residence for adult patients and their families that opened in June 2005. "My work was very important to me," she said, so she gritted her teeth, took painkillers and focused on her job.
A month after the lodge opened, Weymouth was set to tackle an embarrassing problem: the 60 pounds she had gained the previous year, which she thought was the result of too much takeout food or stress-related eating.
The day after undergoing a pre-op physical for weight-loss surgery, which included a chest X-ray, she received an urgent call from the George Washington University Medical Center. Doctors needed to do a CT scan: They had spotted something on her lung.
Weymouth wasn't worried. "I figured they saw something from my earlier lung surgery in 1978," she said.
Hours after the scan, she received another call. The test showed several suspicious lesions on her lung as well as her ribs, including the spot where she had drawn the picture for the rheumatologist. "They canceled surgery and told me, 'You need to find an oncologist or lung surgeon immediately,' " she recalled.
Weymouth was stunned -- and panicked. She telephoned a friend at the National Cancer Institute and began testing to determine what was wrong. Doctors ruled out lung cancer, then lymphoma; they performed a biopsy on her lung and then the rib, which had begun to crumble.
A rare diagnosis
It took three weeks for doctors to make a diagnosis: Weymouth had the most advanced stage of a slow-growing malignancy called a lung carcinoid, which is classified as an orphan cancer because it is so rare.
Carcinoid tumors typically arise in the digestive tract and, less often, in the lungs. Because they start small and grow much more slowly than other forms of lung cancer, they may not cause symptoms -- coughing, wheezing and, less often, sudden weight gain -- until they are advanced. About 3,000 lung carcinoid cases are diagnosed annually in the United States, according to the American Cancer Society; the average age at diagnosis is 60. There is no known cause of or cure for carcinoid, which has been the subject of relatively little research. Treatment includes a combination of surgery, chemotherapy, radiation and experimental protocols.
Weymouth has undergone all of those and has been enrolled in several clinical trials at NIH. Sometimes she stayed in the Safra Lodge, an experience as gratifying for her as it was unexpected.
Martin E. Gutierrez, formerly a principal investigator at NCI's Developmental Therapeutics Section, treated Weymouth from the day she received her diagnosis in August 2005 until 2008, when he moved to Florida.
"We managed to control her disease, and she did reasonably well," he said. Gutierrez estimates he sees about one case of carcinoid per year.
"It's very hard," said the oncologist, who is medical director of the Holy Cross Cancer Center in Fort Lauderdale. "Even though it is a malignancy, the behavior is different. It's not like patients are dead in six months, but psychologically you obviously have the same weight: 'I have cancer and I'm going to die.' "
It is a burden Weymouth feels acutely, even though "if you look at me you'd never know I was sick," she said. "That's why carcinoid is called 'the good-looking cancer.' " In recent months new tumors have appeared in her lung, and one on her liver is growing.
"I try really hard not to let it depress me," she said, adding that some carcinoid patients have lived with the disease for 20 years, a feat she hopes to emulate. She compares her treatment to the game whack-a-mole: Doctors have so far managed to beat back tumors that pop up, "but you never get to forget about it for a while."
Weymouth said she derives strength from her family, friends and volunteer work. She said she still misses Capital Area Carcinoid Survivors, the support group she attended when she lived in Bethesda.
She now knows that the lung infections that began in 2000 were not bronchitis or asthma but symptoms of carcinoid, and that the disease might have been present for years -- and would have been visible on a CT scan or even an X-ray.
"I felt so many people could have found it earlier," said Weymouth, who said she wrestled with anger for a long time. "But then I was thankful because I'm not sure they could have done much about it. If I had known about it sooner, things might not have been accomplished that I'm proud to have accomplished."
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