For most people, the years of adolescence and young adulthood serve as a coming-of-age when people begin to gain independence and establish their identities socially, sexually and in the “real” world. But for the 70,000 Americans between the ages of 15 and 39 diagnosed with cancer each year, these plans are thrown off.
To learn more about the psychosocial effects cancer has on adolescents and young adult (AYA) patients, CURE spoke with Bradley J. Zebrack, Director of Vivian A. and James L. Curtis School of Social Work Research and Training Center at the University of Michigan School of Social Work.
Do AYAs have their own segment of care, or are they typically lumped in with either the children or adults?
In the United States, there’s really no specific model of care for young people who fall between the ages of 15 and 40.
But what's even worse is that some of them wind up in pediatric care and some of them wind up in adult care and its arbitrary where teenagers and young adults end up getting their care. It affects them because it raises the question of whether they are getting the optimal treatment.
For example, if an 18-year-old is diagnosed with leukemia and winds up in an adult medical oncology setting, there’s a chance that he or she might be treated on an adult protocol. And yet, we have evidence that suggests that a pediatric protocol actually ends up with better outcomes for that patient. So it is almost arbitrary and luck whether or not they're going to get the best care.
What are the psychosocial effects of cancer on adolescents and young adults? How are they different than those in older patients?
The level of isolation that young people experience is so much more than older adults or children who are diagnosed with cancer. They have limited experience with the health care system compared to a child in which parents are most likely involved in care and making decisions. If you're an older person with cancer, chances are you've known other people who've had cancer. It's not as foreign to you as an older adult as it is for someone in their teenage or young adult years.
We also know that isolation at a teenager has long-term impact, particularly in the field of employment. We know that what you earn in income as a person in your 20s predicts what your income is going to be pretty much for the rest of your life. So if you start off low because you've had cancer, that doesn't bode well for the remainder of your life.
Are there any topics in AYA cancer that you feel aren't being talked about enough?
Issues related to sex and sexuality are emerging. That's an issue relevant to teenagers and young adults. Even among those who don't have cancer, this is a stage in life when people are trying to learn about entering into intense, emotional and intimate experiences.
Some of the physical side effects might be enduring from the radiation or the chemotherapy. These young people are recognizing that this is the time of their life when they're supposed to be out there in the world — possibly having sex — but many of them just don't feel like it. We’re not doing a good job attending to the emotional impacts from the physical effects.
AYAs diagnosed with cancer have a lower long-term survival rate than children and older adults. Why do you think this might be? Could it be because of these psychosocial effects?
It could be related to psychosocial effects, in an indirect way. For example, if you're so emotionally distraught about your cancer, you may blow off your treatment. You may not adhere to the treatment protocol as well without that emotional support. I think that's one of the challenges.
I think another one of the challenges is that we still don't know enough about which are the right treatments for young people. For example, there's evidence to suggest that there may be something about young women who respond — biologically — in a different way to the tumor and to chemotherapy, compared with older women. But we just don't know enough yet to help us determine what are the right treatments and the right doses that are needed for this population.
It is relatively rare for a young person to be diagnosed with cancer, which means it's going to be relatively rare for an oncologist to be treating a young person with cancer. They might see one person in their 20s or 30s once a year or once every couple years. This creates yet another unique challenge.