ONCOLOGY Nurse Edition.
Understanding the Needs of
Young Adult Cancer Survivors:
A Clinical Perspective
By Rachel Odo, LCSW
Clinical Oncology Social Worker
New York, New York
Clarissa Potter, LCSW
Clinical Oncology Social Worker
Manager, Quality of Care Initiative
Memorial Sloan-Kettering Cancer Center
New York, New York |
October 8, 2009
This pressure, combined with societal expectations of the cancer survivor—the myth of the epiphany—can be a tremendous burden for young survivors: “Shouldn't I always be thankful, shouldn't it be that I never get upset by the small things and always focus on how fragile life is? I feel that I have betrayed myself because I am not acknowledging how lucky I am all the time.” While some will make major life changes, many will not and will find this pressure to be an impediment to the process of acclimation to life beyond cancer.
Just as the cancer experience has an impact on physiological and emotional aspects of development, practical matters are also affected: roles, relationships, goal-setting, education, career, finances, insurance.[19–21] Cancer and its treatments interrupt normal developmental pathways. In addition to the emotional aspects of intimate disclosure, for example, young adults may struggle with the practical aspects of public disclosure. They may be inclined to disclose that they are cancer survivors because of the prominence of the experience in their lives, but they may be justifiably concerned about the implications of telling educators, employers, and new acquaintances about their illness: “At first, you tell everyone. Then you realize your vulnerability. Then you share more wisely.”
School, work, financial development, plans, and relationships can be cut off, put on hold, or challenged in any number of ways during treatment. All of this must be addressed during the post-treatment period: “I have lost my self-discipline, my sense of achievement. Every hurdle, whether it is prejudice in hiring a cancer survivor or anything else, diminishes my hope of pursuing my dreams.” These concerns are the external defining elements of daily life that enable young adults to develop a sense of identity and purpose and to function in the world. Often, these are the issues that survivors first identify as distressing.
Ultimately, social issues at every level become salient for young adult survivors. Access to information relevant to cancer survivors' legal rights, resume writing, job hunting, disclosure, and the opportunity to connect with others who have faced the social hurdles that arise in the wake of cancer, can be an indispensable asset in the process of recovery. “We're all similar in a big way— everyone thinks we're out of the cancer world and dealing REALLY well. But, in our own minds we're not, we're still very much there. It's comforting to know that there are people who understand what it feels like to be you.”
The end of treatment can signal a complex period of recovery. For young adults, the most salient concerns that arise are as closely related to their developmental stage as to the cancer experience itself. Physical, emotional, and practical recovery can be assisted and supported through appropriate clinical services and interventions. Psychoeducational support services such as those provided by organizations like Memorial Sloan-Kettering's Post-Treatment Resource Program, CancerCare, the Lance Armstrong Foundation, I'm Too Young For This, or Planet Cancer can be critical factors in healing.
These organizations can be significant resources as young adults grapple with the process of integrating the cancer experience and seek to reduce the negative and intractable power of cancer. A sense of normalcy can be regained and the motivation to move forward can be more firmly established. The illness and its aftermath can come to be understood not as a defining aspect of the self but as just one of many aspects of a survivor's identity: “It's all part of feeling a new sense of being you. It's strange how this can simultaneously make you feel more confident and more insecure.”
Given the current national interest in cancer survivorship, and the issues unique to this population, the field is ripe for an increased focus on young adult survivorship. The intersection of post-treatment recovery and young adult development presents highly promising entities for clinicians and researchers. In spite of the losses, the sadness, the anger, and the confusion, young adult survivorship is potentially a period of significant growth, possibility, and hope.
1. The Abramson Cancer Center of the University of Pennsylvania, OncoLink: Did You Know…the Facts About Young Adults and Cancer? Available at: http://www.oncolink.com/coping/article.cfm?c=7&s=35&ss=154&id=1031
. Accessed on August 15, 2009.
2. Burwell SR, Case LD, Kaelin C, et al: Sexual problems in younger women after breast cancer surgery. J Clin Oncol
3. Goodman A: Premature menopause in young breast cancer survivors: Effects on quality of life not well studied. Oncology Times
4. Zebrack BJ, Chesler M: Health-related worries, self-image and life outlooks of long-term survivors of childhood cancer. Health Soc Work
5. Connell S, Patterson C, Newman B: A qualitative analysis of reproductive issues raised by young Australian women with breast cancer. Health Care Women Int
6. Green D, Galvin H, Horne B: The psycho-social impact of infertility on young male cancer survivors: A qualitative investigation. Psychooncology
7. Zebrack BJ, Casillas J, Nohr L, et al: Fertility issues for young adult survivors of childhood cancer. Psychooncology
8. Baker F, Denniston M, Smith T, et al: Adult cancer survivors: How are they faring? Cancer
104(11 Suppl):2565–2576, 2005.
9. Ganz PA, Greendale GA, Petersen L, et al: Breast cancer in younger women: Reproductive and late health effects of treatment. J Clin Oncol
10. Thewes B, Butow P, Girgis A, et al: The psychosocial needs of breast cancer survivors: A qualitative study of the shared and unique needs of younger versus older survivors. Psychooncology
11. Benson PL, Scales PC, Hawkins JD, et al: Successful young adult development. A report submitted to The Bill and Melinda Gates Foundation, 2004. Available at: http://www.gatesfoundation.org/nr/Downloads/PNWG/EarlyLearning/SuccessfulDevelopment.pdf
. Accessed on August 15, 2009.
12. Coups EJ, Ostroff JS: A population-based estimate of the prevalence of behavioral risk factors among adult cancer survivors and noncancer controls. Prev Med
13. Park EB, Emmons KM, Malloy NW, et al: A qualitative exploration of health perceptions and behaviors among adult survivors of childhood cancers. J Cancer Educ
14. Sammarco A: Perceived social support, uncertainty, and quality of life of younger breast cancer survivors. Cancer Nurs
15. Bauld C, Toumbourou JW, Anderson V, et al: Health-risk behaviours among adolescent survivors of childhood cancer. Pediatr Blood Cancer
16. Manning-Walsh J: Spiritual struggle: Effect on quality of life and life satisfaction in women with breast cancer. J Holist Nurs
17. Boman KK, Bodegard G: Life after cancer in childhood: Social adjustment and educational and vocational status of young-adult survivors. J Pediatr Hematol Onco
l 26(6):354–362, 2004.
18. Killoran M, Schlitz MJ, Lewis N: “Unremarkable” recoveries: Normalizing adversity and cancer survival. Qual Health Res
19. Langeveld NE, Ubbink MC, Last BF, et al: Educational achievement, employment and living situation in long-term young adult survivors of childhood cancer in the Netherlands. Psychooncology
20. Stewart DE, Cheung AM, Duff S, et al: Long-term breast cancer survivors: Confidentiality, disclosure and effects on work and insurance. Psychooncology
21. Zebrack BJ, Walsh-Burke K: Advocacy Needs of Adolescent and Young Adult Cancer Survivors: Perspectives of Pediatric Oncology Social Workers. J Psychosocial Oncol
22. Tesauro G, Rowland J, Lustig C: Survivorship resources for post-treatment cancer survivors. Cancer Pract
23. Rowland JH, Hewitt M, Ganz PA: Cancer survivorship: A new challenge in delivering quality cancer care. J Clin Oncol