The Teenager with Cancer: Struggling to Be Heard and Understood

TOP - September 2010, Vol 3, No 6

BERLIN—The field of oncology has come a long way in improving communication between healthcare providers and their patients with cancer—that is, unless the patient happens to be an adolescent.

From diagnosis through treatment, profound deficits still remain in the care of this age group, according to several presentations at the Joint Congress of the European Cancer Organisation and European Society for Medical Oncology.

A study by British researchers may be the first to ask young patients about their experiences from the onset of symptoms to diagnosis. The researchers conducted narrative interviews with 24 patients aged 16 to 24 years, 2 to 4 months after they were diagnosed with solid tumors. The medical notes for each participant were also examined.

Although individual experiences varied, several common themes emerged. Key findings included a pattern of not being heard and frequent delays in diagnosis, stemming from the belief that “young people don’t get cancer,” said Susie Pearce, health service researcher at the University College Hospital, London. She presented the study at the meeting.

Although cancer is rare in young people, it is the most frequent cause of death in persons aged 15 to 24. The long-term outcome for some malignancies is relatively poor, compared with that of children and adults, and delay in diagnosis is thought to be a factor, she said.

“While symptoms in some young people were promptly recognized by primary care physicians and the person was 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 before the cancer was diagnosed,” she said.

From symptom onset to diagnosis: often years

In the study, the time period between symptom onset and diagnosis ranged from 8 weeks to 11 years. The subjects’ symptoms were often attributed to menstrual problems, irritable bowel syndrome, excess body weight or fluid, and lack of exercise.

“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,” Pearce said.

In one case, a 22-year-old woman with metastatic colon cancer recounted a frustrating battle to be taken seriously after 9 years of suspicious symptoms, such as food aversion, abdominal pain, frequent diarrhea, and rectal bleeding, from the age of 14. She had previously received two separate diagnoses of familial adenomatous polyposis, which carries a high risk of colon cancer. The young woman died soon after her participation in this study. 

The survey found that  the reaction of parents was important in determining how long the adolescents were willing to endure symptoms and how hard they pushed for answers to their concerns. The threshold usually came when normal physical, social, and emotional functioning became impossible.

“The stories are, sadly, far from unique,” Pearce added. “Doctors should be making urgent referrals when children or young people come to see them several times with the same problem, and persistent parental anxiety should be sufficient reason for referral.”

Caring for the adolescent with cancer

“It is fundamental to the care of young people with cancer to maintain open lines of communication and to treat them as equals in an environment of mutual trust and honesty. We need to seek out and listen to what young people tell us about their experience of cancer care,” said Faith Gibson, PhD (Nursing), clinical professor of children’s and young people’s cancer care, University College London Institute of Child Health, and Great Ormond Street Hospital for Children, London.

With communication lines open, next comes the patients’ involvement in complex discussions and decision-making. This means involving them as active agents in the partnership of care, and helping them understand the implications of what is happening to them and the consequences of the decisions they make. They need to be able to take control and to know their options. And they need individualized information, because, certainly for this age group, “one size does not fit all,” she said.

A cancer is a tremendous challenge to a young person, she explained, because he or she is in a pivotal stage of development. Young people are in the process of forming a clear identity, accepting a new body image, gaining freedom from parents, developing a personal values system, achieving social and financial independence, developing relationships with both sexes, developing cognitive skills and abstract thinking, and taking responsibility for their behavior.

“We need to understand what it is like for a young person to be diagnosed with cancer and how they cope with normative developmental processes,” she advised.

Special needs of young patients

This can lead to special needs that are not observed as much for patients of other ages, she said, illustrating them through case studies and narratives. Some of their special needs are shown in the Table.

“What does this mean for how we deliver cancer care?” she asked. It means that staff should understand the adolescent culture, design an appropriate environment for them, listen to their concerns, treat them with respect, understand their family and social structure, and enable them to have close contact, not only with family but with friends, who are particularly important at this age.

“It also depends on our understanding the supportive behaviors that promote coping strategies,” she added, which include “hoping for the best, having the right attitude, knowing what to expect, making sense of a bad situation, taking one day at a time, taking time for yourself, and staying connected.”

Cancer care for young people is still a work in progress, she acknowledged, with many “unknowns.” Researchers such as Gibson are striving to better understand:

  • What information would help young people make a treatment choice
  • The most effective and preferred way to receive information
  • How well services already involve young people in decision-making
  • The best way to deliver complex information over time
  • What information would help young people continue to engage with services and follow-up.
Last modified: May 11, 2017