Cancer is undeniably difficult both for adults and for children. Even if they don't fully understand the ramifications, adults usually enter treatment knowing who they are and where they stand in life. Children usually enter treatment by following their parents' lead. Adolescents and young adults, at times, don't have such a firm footing.
Further, improvements in survival rates for adolescents and young adults – called AYAs – haven’t improved at the same rate as those for children and adults. With cancer as the leading cause of disease-related death among adolescents and young adults, many more advances in care and treatment are needed.
Here, Jonathan Espenschied, director of Graduate Medical Education and Clinical Training at City of Hope and a researcher on cancer among adolescents and young adults, explains how cancer affects young people differently and what steps need to be taken to serve them better. To begin with, he says, hospitals, doctors and other health care workers need to streamline assessment and treatment, improve their use of technology, provide comprehensive AYA specific support and, of course, conduct more research.
How is cancer for young adults different?
Forget about the cancer part for a second, and think about the physical and emotional development in this age group. This an important time in a young adult’s life where they’re figuring themselves out; their body and minds are developing, their personalities evolving. This age group is on the cusp of figuring out who they want to be and where they want to go in life. When cancer is thrown in, some of these processes may be halted; at times, they may regress and at the very least they have to hit pause. Before cancer, this age group was thinking about school, hopes and dreams, relationships, careers and hobbies. When coping with cancer, they’re often dealing with anger, fear, financial uncertainty, dependence and body image along with social and physical changes.
Why have survival rates for young adults with cancer not improved?
Research has shown that pediatric cancer five-year survival rates have improved over the last 30 years, as have cancer survival rates for people at age 40 and above. These same outcomes have not improved at the same rate for AYA patients. Possible reasons for this can be our limited understanding of the biology and etiology of cancer in this age group, delayed diagnosis/treatment, compliance, psychosocial/supportive care needs or survivorship and follow-up. And unfortunately, we are not seeing the overall cancer incidence rate for this age group decreasing significantly.
What are the most common types of cancers AYA for adolescents and young adults?
The incidence of specific cancers varies dramatically across the 15 to 39 age group. For 15- to 24-year-olds, it’s leukemia, lymphoma and testicular cancer. When you start hitting the older end of the AYA spectrum, 25 to 39, breast, cervical, uterine and colorectal cancers become more prevalent. We need to see more data and more studies on this population to see what inferences can be made to help this group. Unfortunately, limited numbers of AYA enrollment on clinical trials may further delay these gains in knowledge.
Is there anything that can be done to lower the incidence of any of these cancers?
An area where we have seen incredible success in preventing some forms of cancer in this age group is the use of the vaccine against human papillomavirus (HPV). The HPV vaccine effectively prevents infection with two of the HPV types that are responsible for most cervical cancers. The Centers for Disease Control recommends that all women age 26 and younger, and all men 21 years and younger, get vaccinated.
What is important about the patient/doctor relationship at this age?
It’s important for physicians to discuss and involve the AYA patient with their treatment and care choices, when at all possible. Often, AYA patients feel a loss of control during this difficult time, which can lead to noncompliance or acting out. AYA patients should not be afraid to ask questions, and actively participate in their care.
How can we approach AYA care differently?
Consistently utilizing psychosocial and supportive care from the very first visit can alleviate some of the confusion and anxiety we can see in AYA patients. The identification of current needs and possible hurdles before treatment can assist health care providers in properly utilizing in-house and community resources during and after treatment.
Cancer is a life-changing event, and starting at the beginning can alleviate a lot of changes that may present during or after treatment. AYA patients should undergo a comprehensive assessment in order to identify any issues that can affect treatment, compliance and survival. The National Comprehensive Cancer Network (NCCN) has created supportive care guidelines for the AYA oncology patient and survivor that recommend including a psychosocial assessment, discussions on risks of infertility and options, and even genetic and familial risk assessment when appropriate.
Access to needed, specific AYA resources, throughout the whole process, may impact treatment, compliance and survival outcomes for this vulnerable population. Focusing on attacking their cancer and then coming in to help with the aftermath may not be the best approach. At City of Hope, we’ve seen how important it is to treat and cure the whole person from the start and into the future.
How does social media’s presence affect young adult patients during cancer?
Social media is mainly very positive during treatment. The only downside is that it can amplify the fear of missing out on activities with friends or with school. It is otherwise a great tool that allows patients to instantly share their stories, progress and milestones with their network. Sharing one’s cancer journey can be therapeutic.
Social media means support is closer and quicker than ever. Many times, one’s social community becomes a big part of their support community.
What type of advancements do you hope to see in the treatment of AYA cancers in the next 10 years?
We need a universally implemented, multipronged approach:
1. Assess at Day Zero. Don’t wait. Making sure an AYA is informed about his or her treatment is crucial. Discuss cancer, fertility, psychosocial issues and what resources are available at your institution and across the country instead of waiting until the end of treatment. We need to help them think about the things that they won’t know to think about.
2. Develop a universal, comprehensive assessment that is used by all providers treating AYA patients. The NCCN has AYA guidelines, but clinical guidelines need to be adopted across the board. Making sure patients are being treated in the right setting, at the right centers and with the right approaches. These factors can make an impact on the treatment and survival outcomes.
3. Provide better social communication from all of us. Build upon what has already taken shape on social media, and continue to provide patients with accurate facts and information. For more information on City of Hope's AYA program, visit www.cityofhope.org/adolescents-and-young-adults.
What support systems can young adults turn to?
Critical Mass – A young adult cancer alliance made up of scientists, doctors, advocates and patients offering resources that adolescent and young adults with cancer need to survive and thrive.
Stupid Cancer – An organization that empowers young adults affected by cancer through innovative and award-winning programs and services.
First Descents – Outdoor adventure programs designed to empower participants to kayak, surf and climb beyond their diagnosis, while defying their cancer, reclaiming their lives and connecting with others doing the same.
Planet Cancer – A community of young adults with cancer in their 20s and 30s through which people share insights, explore their fears, laugh and talk about cancer with others who understand.
Imerman Angels – This organization puts patients in touch with someone similar to them who has already been through the cancer experience, helping create a supportive relationship.
American Cancer Institute - The ACI offers abundant helpful information that includes fertility options, financial assistance and support outlets.
Thrive/Survive Los Angeles – Run by cancer survivors, Thrive/Survive is a community of people in Los Angeles that helps young patients access real, relevant and practical information and resources.
Adolescents and Young Adults with Cancer – The National Cancer Institute provides information on common cancers in young people, including how cancer is diagnosed and treated, tips on coping and a list of helpful organizations.
Read the story of Monica Curiel, diagnosed with lymphoma at age 19, just as she was starting college far from home.