Young Adults with Cancer Face Unique Challenges
by Doug Ulman and Diana Ulman
In the natural course of life, young adults go forth with optimism, idealism, and a belief that they are indestructible. When they are robbed of that special perspective because of a life-threatening disease, they have a particularly difficult adjustment to make. There are issues that are very specific to young adults dealing with cancer. Just as these young people should most likely be separating from family and becoming independent, they are pulled back into a dependent role due to the need for family help and support.
Living arrangements often complicate the situation as many young adults live a distance from family, either because they are away at school or working in a different community from where they grew up. Should they move back home and give up school and peer support, or should they stay away from home and be far from family support? Should they travel back and forth and then need doctors in both locations? It is important to have medical and emotional support systems in place, no matter where they choose to live.
Most young adults do not have experience in making major medical decisions. They find themselves thrown into a situation of supreme importance. They must sign authorization forms for procedures to be done where frightening side affects are listed alongside headache and dizziness. They must also make very crucial treatment decisions. Clear and honest explanations are critical. For parents, respecting your child’s decisions when they differ from your choices is extremely difficult but important. Some medical professionals talk only to the young adult and ignore parents, while other medical professionals talk to parents, ignoring the person with cancer. Yet others play one against the other. Furthermore, some family members have difficulty communicating with one another. It is helpful to be able to work through decision processes together as a family, but of course, the final decision is the prerogative of the person with cancer.
Most young adults do not have experience in making major medical decisions.
Health insurance is often not in place as young people move from coverage under their family’s policy to one of their own. Also, most young adults have not yet purchased life insurance, and they may find themselves ineligible once they are diagnosed with cancer. Even those people who have health insurance can experience financial stress as bills for co-payments, deductibles, lost wages, or travel for treatment add up. Finding financial help and deciphering bills is another challenge that parents can often help with, alleviating another burden that can be overwhelming.
The decision as to whether to go public or not with the information that one has a life-threatening illness is a difficult one for young adults. It is important to proceed with life in as normal a way as possible, and telling everyone about the illness can make normalcy difficult. On the other hand, support from friends and family is very helpful to recovery and survival.
Navigating medical care, medications, and follow-up treatment can be overwhelming, on top of trying to get back to school or work. Assuring good nutrition and meal preparation is another burden on a young adult who perhaps has not yet become proficient in that area.
If chemical treatments are indicated, then concerns of fertility come to light. Saving sperm or eggs may be desirable, and can be another unexpected cost. There is often a small window of time in which this can be done. It is wise to speak with a fertility clinic (andrology clinic) or visit www.fertilehope.org to learn about fertility storing options early in the process while the opportunity exists.
Dating and intimacy can also be difficult for young adults as they recover from treatment. Many worry that their cancer, the possibility of recurrence, or the possibility of infertility will be obstacles to serious relationships. Body image is also a concern for those who may have scars or some type of disfigurement. Sensitivity to these subjects is imperative, and support from others who are dealing with the same issues is very helpful.
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Doug Ulman is a three-time cancer survivor and is president of the Lance Armstrong Foundation, www.livestrong.org. He, with the help of his mother and caregiver, Diana, founded the Ulman Cancer Fund For Young Adults (www.ulmanfund.org).
Excerpted with permission from No Way, It Can’t Be!, A guidebook for young adults facing cancer by Doug and Diana Ulman, copyright © 2006 by the Ulman Cancer Fund for Young Adults, Inc.
This article was originally published in Coping® with Cancer magazine, March/April 2008.