Childhood and AYA Cancer Survivorship

Fast Facts: Childhood Cancer Survivorship

As of January 1, 2010, there were approximately 380,000 of survivors of childhood and adolescent cancer (diagnosed at ages 0 to 19 years) alive in the United States.
Approximately 1 in 285 children will be diagnosed with cancer before age 20 years, and approximately 1 in 530 young adults between the ages of 20 and 39 years is a childhood cancer survivor.
The number of childhood survivors will continue to increase, since the incidence of childhood cancers have risen slightly in recent years and the overall survival rates are improving.
Childhood cancer survivors face unique issues as survivors as they may receive more intense treatments and the treatments given have different effects on growing bodies.
Childhood cancer survivors are at risk of complications and premature death as they age, with more than half of survivors having experienced a severe or disabling complication or even death by the time they reach age 50 years.
It’s important for childhood cancer survivors to have regular screenings and medical follow-up examinations so any health problems that occur can be identified and treated as soon as possible.

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Fast Facts: Adolescent and Young Adult (AYA) Cancer Survivorship

According to the National Cancer Institute, approximately 70,000 young people (ages 15-39) are diagnosed with cancer each year in the United States – accounting for about 5 percent of cancer diagnoses in the United States.
Studies have found that many young adult cancer survivors are often unaware of or underestimate their risk for late effects.
Survivors of AYA cancers, like their pediatric counterparts, are also at increased risk for life-threatening problems such as second primary cancers, cardiac conditions as well as psychiatric concerns such as post-traumatic stress disorder and depression.
Many survivors of AYA cancers are not receiving risk-based, long-term follow-up care when they transition from completion of active treatment to the survivorship phase of care.
As with all survivors, the approach to monitoring and surveillance among AYAs for late effects should be tailored to the types of treatments survivors received.

For many young people and their families, the completion of cancer treatment is something to celebrate. However, survivorship may also bring new challenges. Many worry their cancer will return. After being a patient, children and young adults struggle to get used to new routines and the return to school and social activities. Many young people enter their cancer survivorship feeling stronger, whereas others are more fragile. For most young people the transition from treatment to survivorship takes longer and is more challenging than many anticipate.

While most of the side effects that childhood and AYA survivors had during treatment will go away soon after treatment, long-term side effects, such as fatigue, may take time to go away. Late effects of treatment including surgery, chemotherapy and radiation, may not occur until months or even years after treatment. AYAs frequently have concerns for fertility, body awareness and relationships that are different and more acute than those affecting older cancer survivors.

Follow-up care is important for all survivors, it is especially important for childhood and AYA cancer survivors. Having a cancer care summary and survivorship plan are important tools to provide care information for all survivors, but changes in job and school locations may make these tools more important for younger adults. Making sure to have the recommend check-ups and screening can be reassuring and also help to prevent and/or treat medical and psychological problems. Some young adults receive follow-up care at the hospital where they were treated, and others see specialists at survivorship clinics. AYAs should talk with their health care team to learn what follow-up care is needed and where to go for screening and survivorship care. To find cancer survivorship clinics specializing in childhood and AYA cancer care, visit www.MyHealthFinder.org.

To find information on late effects and areas of concern for Childhood and Young Adult Cancer Survivors see the list of HealthLinks below developed by the Children’s Oncology Group.

(we need to host the PDFs of the HealthLinks on the HealthyNow Server)

Organizations and Resources

There are a number of organizations and programs that focus on the needs of childhood and young adult cancer survivors. Many organizations work to help young adults connect with peers who have gone through the same things. Others address specific topics like fertility, educational and financial needs. For example, the Stupid Cancer has an annual conference and also offers web radio call in and texting to bring together young adults and medical experts and others to share information and advice. The list below provides a range of emotional, practical, education, financial and other support services for childhood and AYA cancer survivors.

References

Last Updated 5.6.2015

Childhood Cancer Survivors

The Surveillance, Epidemiology, and End Results (SEER) program of the National Cancer Institute reports long-term, high-quality, population-based incidence data covering up to 28% of the US population.

Data for incidence trends (1975-2010) are from the SEER 9 registries and incidence rates (2001-2010) by single year of age were based on SEER 18 registries. These data represent the most current survivorship statistics as of January 2016.

Kremer, L., Mulder, R. L., Oeffinger, K. C., Bhatia, S., Landier, W., Levitt, G., … & Skinner, R. (2013). A worldwide collaboration to harmonize guidelines for the long‐term follow‐up of childhood and young adult cancer survivors: A report from the international late effects of Childhood Cancer Guideline Harmonization Group. Pediatric blood & cancer, 60(4), 543-549.

Huang, I. C., Brinkman, T. M., Armstrong, G. T., Robison, L. L., & Krull, K. R. (2014, May). Mediating role of emotional symptoms on assessment of health-related quality of life of adult survivors of childhood cancer: A report from the childhood cancer survivor study. In JOURNAL OF CLINICAL ONCOLOGY(Vol. 32, No. 15). 2318 MILL ROAD, STE 800, ALEXANDRIA, VA 22314 USA: AMER SOC CLINICAL ONCOLOGY.

Badr, H., Chandra, J., Paxton, R. J., Ater, J. L., Urbauer, D., Cruz, C. S., & Demark-Wahnefried, W. (2013). Health-related quality of life, lifestyle behaviors, and intervention preferences of survivors of childhood cancer.Journal of Cancer Survivorship, 7(4), 523-534.

Adolescent and Young Adult Cancer Survivors

The Surveillance, Epidemiology, and End Results (SEER) program of the National Cancer Institute reports long-term, high-quality, population-based incidence data covering up to 28% of the US population.

Data for incidence trends (1975-2010) are from the SEER 9 registries and incidence rates (2001-2010) by single year of age were based on SEER 18 registries. These data represent the most current survivorship statistics as of January 2016.

National Cancer Institute, National Institutes of Health. A snapshot of adolescent and young adult cancers. http://www.cancer.gov/research/progress/snapshots/adolescent-young- adult. Accessed March 28, 2016.

Zebrack, B. J., Block, R., Hayes‐Lattin, B., Embry, L., Aguilar, C., Meeske, K. A., & Cole, S. (2013). Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients. Cancer,119(1), 201-214.

Zebrack, B. J., Corbett, V., Embry, L., Aguilar, C., Meeske, K. A., Hayes‐Lattin, B., & Cole, S. (2014). Psychological distress and unsatisfied need for psychosocial support in adolescent and young adult cancer patients during the first year following diagnosis. Psycho‐Oncology, 23(11), 1267- 1275.

Smith, A. W., Bellizzi, K. M., Keegan, T. H., Zebrack, B., Chen, V. W., Neale, A. V., … & Lynch, C. F. (2013). Health-related quality of life of adolescent and young adult patients with cancer in the United States: the Adolescent and Young Adult Health Outcomes and Patient Experience study. Journal of Clinical Oncology, JCO-2012.

Gupta, A. A., Papadakos, J. K., Jones, J. M., Amin, L., Chang, E. K., Korenblum, C., … & Giuliani, M. E. (2016). Reimagining care for adolescent and young adult cancer programs: Moving with the times. Cancer.