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Oct. 9, 2009 -- About three years ago, Jay Wheeler, now 17, started having serious headaches and becoming increasingly forgetful. Over the next four months, he was sent to detention 52 times; the British youngster kept forgetting to ask his mother to sign the slip, earning another detention.
Jay’s teachers ascribed his behavior to that of a difficult teenager, but his mother knew something was wrong. Five trips to the doctor didn’t help, though; Jay was misdiagnosed with conditions ranging from stress headaches to migraines. Meanwhile, Jay started getting pains in his neck and arms that caused him to stoop.
More than eight months went by before Jay was seen by a pediatrician who suspected cancer could be causing his symptoms. A CT scan confirmed the diagnosis. Jay was rushed by ambulance to Great Ormond Street Hospital in London, where he had emergency surgery for an advanced brain tumor.
The delayed diagnosis led to a longer, more intense course of treatment than would otherwise have been needed, according to his physicians. Six months of radiation and 18 months of intensive chemotherapy severely affected Jay’s short-term memory and impaired his hearing.
Although he is now back in school, Jay tells WebMD that he still gets “quite tired. And I believe I would have recovered more quickly had my symptoms been taken seriously from the start,” he says.
Jay’s experience is not uncommon. In the first study of its kind, British researchers have found that teen and young adult cancer patients often feel frustrated that their symptoms are not taken seriously.
The research, composed of interviews with 24 cancer patients aged 16 to 24, was presented at a meeting of the European Cancer Organization and the European Society of Medical Oncology in Berlin.
"While symptoms in some young people were promptly recognized by general practitioners and referred to specialists quickly, other patients recounted tales of protracted periods of suffering, with rationalization of their own symptoms or numerous disappointing visits to doctors and hospitals before the cancer was diagnosed,” says lead researcher Susie Pearce, a health service researcher for young people with cancer at University College Hospital in London.
“One consistent thread through these stories is young people’s perception that they were not being listened to and that cancer was being ruled out on age alone,” she says.
Gregory H. Reaman, MD, a specialist in pediatric cancer at George Washington School of Medicine in Washington, D.C., tells WebMD that the situation is similar in the U.S. “And it’s true for children, not just teens and young adults,” he says.
“The symptoms are pretty nonspecific -- lethargy, pain, fever, for example. So they are generally attributed to something other than cancer, given the rarity of cancer in this age group,” Reaman says.
Young people aged 15 to 24 account for less than 2% of all cancer cases worldwide, Pearce says.
For the new study, Pearce and colleagues interviewed the young adults two to four months after they were diagnosed with cancer. They also analyzed the medical notes of each participant.
The study showed that time between when the first symptoms appeared to diagnosis ranged from eight weeks to 11 years.
Before the correct diagnosis was made, doctors told patients that it “was normal to feel tired, that symptoms were due to menstrual problems, fluid on the knee, irritable bowel syndrome, excess weight, or lack of exercise,” Pearce tells WebMD.
In one case, a young woman “thought she was going mad” after three months of headaches and 12 visits to doctors, Pearce says. Finally, after breaking down and crying at her doctor's office, she was referred to a specialist and found to be suffering from neuroblastoma, a cancer of the nerve tissue.
In another case, a 22-year-old woman had symptoms such as frequent diarrhea, abdominal pain, and rectal bleeding for nine or 10 years before she was diagnosed with colon cancer that had spread to the liver.
The woman has since died.
“She felt quite strongly that if she had been 40 or 50, her symptoms would have been picked up on at a very early stage and she would have been fine, but lots of cues were missed because nobody was thinking that she could have colon cancer,” Pearce said.
In another case, a 23-year-old woman was diagnosed with ovarian cancer 10 months after her symptoms first appeared. In the interview, she said: “I wish they had just listened to me in the beginning. I’d like them more aware so you can’t just be shoved away out the door. It’s your life ... it’s your whole world they are talking about and they are not taking it seriously.”
For his part, Jay Wheeler wishes he had been more assertive when speaking with his doctors.
Reaman agrees that being firm can help. “Symptoms, even nonspecific symptoms, that persist require a more in-depth evaluation, and young adults may need to be assertive about asking for one,” he says.
Among the nonspecific symptoms that can signal cancer:
Reaman stresses that these symptoms are usually just a sign of a benign condition. But if they persist, have them checked out, he says.