Issues facing young adult cancer survivors


Issues facing young adult cancer survivors

Frequently Asked Questions

By Dr. Rebecca Johnson, Seattle Children’s Hospital

Youthfulness is synonymous with good health and seeming invincibility, but nearly 70,000 young Americans between the ages of 15 and 39 are diagnosed with cancer each year.

Having cancer at a young age means more decades of living as a cancer survivor, which brings a unique set of medical and psychosocial concerns. These issues include:

Second primary malignancies—Cancer recurrence or secondary cancers can occur due to chemotherapy or radiation. For those who received both radiation and chemotherapy, there is a two-fold increased rate of a secondary cancer. Young adults may be at higher risk of subsequent cancers due to underlying genetic predisposition. There is also increasing incidence of secondary acute myeloid leukemia in some patients. Because of these increased risks, young adult survivors need to be especially vigilant about follow-up care and screenings. In particular, young women who received radiation therapy to the chest should have a yearly mammogram starting at age 25, or 8 years after radiation ends.

Cardiotoxicity—Some young survivors experience the cardiac risks of much older adults due to cancer therapies. For instance, chest radiation can cause atherosclerosis, or hardening of the arteries. A class of chemotherapy drugs, anthracyclines, can affect the heart muscle and/or cause abnormal heart rhythm or irregular heartbeat. The risk of cardiac side effects is highest in young men, patients who are within 15 years of remission, and those who received higher doses of radiation to the chest. Smoking and obesity, along with drug use and untreated high blood cholesterol and triglycerides, can exacerbate these risks. Survivors should have yearly physical exams and periodic sonograms of the heart to identify any problems. Higher risk patients may need to avoid heavy weightlifting or be monitored for pregnancy-related heart complications.

Infertility—Fertility preservation is a concern unique to cancer patients under 40. Men who receive certain types of chemotherapy, radiation to the pelvis or brain, or who have testicular cancer have a higher risk of infertility. Long-term recovery of fertility is sometimes possible in young male patients. Women who receive certain chemotherapies or radiation to the pelvis or brain also have a higher risk of infertility. The main risk for women is early menopause, particularly for patients in their late 30s. Before cancer treatment, sperm banking, embryo freezing, or surgically moving the ovaries out of the field of pelvic radiation have helped many young survivors preserve fertility options.

Amputation—While limb-sparing surgery is more common today than amputation, cancer amputees face challenges like phantom limb pain, permanent shortening of muscles or joints, infections and prosthesis problems. Survivors with amputation need ongoing follow-up with a multidisciplinary care team that includes orthopedic surgeons, physical and occupational therapists, and possibly chronic pain experts. Many amputees benefit from psychological counseling for body image and self-esteem issues.

Psychosocial challenges—Having cancer at any age is stressful, but young adult survivors face particular social and stage-of-life issues. They have increased risk of suicidal thoughts and a higher risk of depression related to chronic health conditions that affect quality of life. About 16 percent of young adult survivors face post-traumatic stress disorder. Treatment and subsequent chemobrain—attention and cognitive function declines—affect reentry into social circles, school and/or the workforce. Many young adult survivors benefit from support groups and social networking with others facing the same issues.

Financial concerns—Young adults are the most likely of all age groups to be uninsured. Not having medical insurance not only makes follow-up care less likely, it is linked to a higher risk of dying. Through a survivorship program, young people can work with a social worker to secure sources for health care funding, insurance, medical debt relief and disability income, if needed.

Dr. Rebecca Johnson is medical director of Seattle Children’s Adolescent and Young Adult Oncology Program, which treats young adults (through age 29) for leukemia, lymphoma, sarcoma and other pediatric-type malignancies.

Frequently Asked Questions

Q: Why haven’t cancer survival rates improved more rapidly for 15- to 39-year-olds?

A: This is an area of intense and ongoing research, but the lack of improvement in long-term survival in adolescent and young adult patients may be related to physiological differences, such as unique tumor biology, late effects from cancer treatment, and less representation in clinical trials.

Q: Which cancers are most common in young adults?

A: Six types of cancer account for two-thirds of all cases:

  • Breast
  • Lymphoma
  • Melanoma
  • Thyroid
  • Female genital system
  • Male genital system

Q:  Where can I find out more about the concerns of the young adult cancer community?

A: The LIVESTRONG Young Adult Alliance is a coalition of many organizations, in partnership with the National Cancer Institute, that are working to improve survival and quality of life through initiatives in research and patient care, awareness, advocacy and community-based programs and services. While there are unique experiences related to specific cancer sites, common issues exist that transcend diagnosis and unite the young adult population.

Other helpful websites include: