Adolescents, Young Adults with Cancer Often Challenged By Unmet Needs Following Treatment 

Institute of Medicine and Livestrong Foundation urge more research.


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About 70,000 adolescents and young adults (AYAs) between the ages of 15 and 39 are diagnosed with cancer each year, and in the past 30 years, there has been little or no improvement in survival in this population. In addition to the disease itself, they face many other challenges: reentry into school or the workforce, infertility as a result of treatment, short- and long-term neurocognitive effects, and cardiopulmonary conditions. And they are at high risk for post-traumatic stress disorder, depression, and suicide.

In July, the Institute of Medicine’s National Cancer Policy Forum and the Livestrong Foundation held a workshop in Washington, DC, to discuss these issues.

Scope of the Situation

Archie Bleyer, MD, Clinical Research Professor, Knight Cancer Institute, Oregon Health and Science University, said that leukemia, lymphoma, and germ cell testicular cancer are the most common among adolescents and young adults under 24. Between ages 25 and 39, they decrease in frequency, whereas metastatic breast, cervical, kidney, and colorectal cancers increase.

On the “plus side,” 12% to 16% of cancers in AYAs are noninvasive. In addition, Dr. Bleyer offered the following particulars on current incidence data in adolescents and young adults:

  • Thyroid and kidney carcinomas are increasing dramatically, the latter more in AYAs than any other age group. This is partly due to better detection.
  • Colorectal and testis cancers also are increasing but not as rapidly.
  • Acute lymphocytic leukemia (ALL) is increasing in and only in adolescents and young adults.
  • Breast cancer has increased during the past decade.
  • Lung cancer has declined in older AYAs, probably because fewer smoke. Melanoma and cervical cancer also have declined because of increased use of sunscreen and human papillomavirus vaccine, respectively.

Only accidents, suicide, and homicide claim more AYA lives than cancer. In females, cancer is the leading disease-related death; in males it is second only to heart disease. White patients with cancer have the best 5-year survival, but they also have the highest incidence. Black patients have the lowest survival rates.

Dr. Bleyer said that AYA cancers are still relatively poorly understood and may be one reason for poor survival. “Disease biology is different in this age group, not only among the cancers themselves but also within individual types and individual patients. Thus, there is an urgent need for more research into the molecular and epidemiologic nature of these diseases, as well as specific treatment strategies.”

Other factors for poor survival include delayed diagnosis, inadequate access to and participation in clinical trials, inadequate treatment, and unmet psychosocial and supportive care needs.

AYA HOPE Study

Few data exist about clinical care and psychosocial problems, and there are few tools to measure them. For these reasons, in 2006, the National Cancer Institute (NCI) undertook the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study in 524 patients. Linda Harlan, PhD, Epidemiologist in the NCI Division of Cancer Control and Population Sciences, explained that this feasibility study was designed to obtain data on consent and to conduct a patient survey.

The patients had germ cell (n = 205), Hodgkin (n = 142) and non-Hodgkin (n = 131) lymphoma, ALL (n = 21), and sarcoma (Ewing sarcoma, osteosarcoma, and rhabdomyosarcoma, n = 25). They were asked to complete the survey at 6 to 14 months after diagnosis, as well as 1 to 2 years after diagnosis.

The survey focused on financial and other barriers to care, social and physical function, the effect of cancer on health-related quality of life, patterns of care delivery, and clinical trial participation. The follow-up contained questions about fertility preservation, school and job adjustment, and new primary cancers.

Approximately 43% of eligible patients responded to the survey, more than one-third of whom reported health-related quality of life problems. Survey findings included:

  • Of patients who had worked or been in school full-time before diagnosis, 72% returned to full-time work or school. Only 34% who had been part-timers returned full-time.
  • Those who had been full-time students or workers but who had no health insurance or who had quit working directly after diagnosis were least likely to return to work or school.
  • Patients who had very intensive treatment and quit work or school as a result believed that the cancer negatively affected plans for the future.
  • More than half said that cancer had a negative effect on their financial situation and body image, and slightly less than half had negative feelings about sexual function, control of their lives, and plans for having children.
  • Surprisingly, more than half found that having had cancer improved their relationship with parents and siblings.

Dr. Harlan said that the study established a need to identify aspects of the cancer burden in adolescents and young adults and provide education and training to improve awareness, prevention, access, and quality of care.

What Cancer Can Mean for AYAs

Karen Fasciano, PsyD, Psychologist, Dana-Farber Cancer Institute, described developmental problems in AYAs with cancer. “At diagnosis, they might have difficulty comprehending information and dealing with their emotions, and they are probably devastated by what the disease will do to their lives. During treatment, they face challenges to their coping skills and are uncomfortable with returning to the dependence they thought they had left behind. When treatment is finished, they see that their lives are irrevocably changed, they need to reevaluate life choices, and, most difficult—they must cope with the uncertainty of the future.”

Eric Tai, MD, Medical Officer in the Centers for Disease Control (CDC) Division of Cancer Prevention and Control, described CDC’s Behavioral Risk Factor Surveillance System, established in 1984 and the largest continuously conducted telephone health survey in the world. “AYA cancer survivors commonly reported behavioral, medical, and health-care access problems, many of which cause poor long-term medical and psychosocial outcomes.”

Preserving Fertility

Ruth Rechis, PhD, Director of Evaluation and Research, Livestrong Foundation, said that in a Livestrong survey, 24% of AYAs took steps to preserve their fertility before treatment began. Among those who did not, 40% said they weren’t interested in having more children, 15% believed they would not be infertile, 22% didn’t have enough time, 17% did not receive appropriate information, and 13% said it was too expensive.

In many cases fertility can be preserved, said Jennifer Levine, MD, MSW, MS, Assistant Professor of Clinical Pediatrics, Columbia University Medical Center. In males, radiation, surgery, and chemotherapy can deplete germ cells temporarily or permanently. They also can damage the ductal system, nerves, and the pituitary gland.

Prevention measures include sperm banking and cryopreservation prior to treatment. This is the most common and effective way to ensure postcancer fertility and should be done before treatment begins. After treatment, men should undergo semen analysis to determine whether stored sperm needs to be saved. Testicular sperm extraction and testicular tissue freezing are available, but both are experimental and expensive.

Preserving female fertility is more problematic but not impossible. Infertility in women can result from surgical removal of or damage to the uterus or ovaries (acute ovarian failure or premature menopause), hormonal dysfunction, and germ cell loss.

Embryo cryopreservation is the easiest and most common way to preserve fertility in women, but it has limitations, including age of the patient, religious beliefs, and the need for a partner or sperm donor. Moreover, it is expensive and can delay the start of treatment. Oocyte cryopreservation is possible, but oocytes are more susceptible to injury than embryos. It too is expensive and time-consuming. If the tumor is limited to the cervix, a radical trachelectomy can preserve fertility. Ovarian tissue cryopreservation is experimental and expensive.

Dr. Levine recommended that all AYA patients discuss fertility at diagnosis, and those who want to preserve it should be referred to a reproductive endocrinologist. If not, fertility should certainly be assessed after treatment.

Lifelong Consequences

For AYA cancer survivors, the consequences of the disease stay with them forever. Patricia Ganz, MD, Distinguished University Professor, Jonsson Comprehensive Cancer Center, UCLA Schools of Medicine and Public Health, believes that lifelong surveillance is critical. “There is broad heterogeneity of cancer types as well as a wide age range,” she said. “Therefore, if a recurrence or second cancer is detected early, we can save a life.”

Factors that should be taken into consideration include rapid vs slow-growing cancers and the implications for frequency and intensity of monitoring, especially for diseases that can be cured at the time of recurrence, and the paucity of evidence-based surveillance guidelines despite disease-specific strategies. For solid tumors and sarcomas, surveillance needs differ for local vs metastatic disease. In hematologic malignancies, the focus should be on imaging, blood markers, and bone marrow exams, Dr. Ganz noted.

There are few competing causes of death in adolescent and young adult patients, she pointed out. Treatment varies, but it tends to be highly successful in germ cell tumors, Hodgkin lymphoma, thyroid, and high-grade non-Hodgkin lymphoma.

Dr. Ganz stressed the importance of awareness that some cancers in the AYA population are associated with a hereditary predisposition gene. These include Li-Fraumeni syndrome, hereditary nonpolyposis colorectal cancer/Lynch syndrome, familial adenomatous polyposis, and BRCA1/2-mutated breast cancers. If you are able to determine that an AYA patient carries a mutated gene that puts him at risk for additional second cancers, then appropriate screening and prevention strategies can be followed. She also addressed the predilection of some treatments, such as radiation and chemotherapy, to cause recurrence and/or second primaries, sometimes 10 to 20 years after initial exposure.

Nevertheless, Dr. Ganz used breast cancer surveillance to illustrate the limitations of some monitoring approaches: “Adjuvant clinical trials called for abandonment of routine monitoring with chest films and various scans in the 1990s because recurrence detection was rare prior to clinical symptoms. In fact, there was no difference in survival outcome for women who had routine office visits and mammograms compared to those who had blood work, chest films, scans, and ultrasounds,” she pointed out.

“Moreover, no data support use of tumor markers, and the rate of false-negatives and false-positives is unknown,” she continued. “In fact, tumor marker results can contribute to further—and unnecessary—medical testing. Nor is there evidence to support the use of routine imaging such as chest and abdominal [computed tomography] scans or whole-body [positron-emission tomography] scans.”

After describing a study in Ontario, Canada, where many AYA patients were found to have excessive imaging studies, exposing them to unnecessary radiation, Dr. Ganz raised several questions about surveillance monitoring with imaging tests:

  • Why are disease-free long-term survivors receiving so many imaging studies, and how can their number, as well as other unnecessary procedures, be reduced?
  • How effective will guidelines be in reducing unnecessary testing?
  • How do we educate and empower AYA survivors?
  • How do we identify high-risk groups and educate primary care providers?

She believes we urgently need an evidence base for surveillance to increase the rationality of testing. “We also need standardized approaches to screening for second malignancies, as well as chemical and surgical prophylaxis. And not least of all, we must implement behavioral and lifestyle risk-reduction strategies to prevent recurrences and second cancers.” ■

Disclosure: Dr. Ganz reported no potential conflicts of interest.


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