When Adolescents and Young Adults Get Cancer

teen aged female cancer patient is embraced by her mother

When an adolescent or young adult gets cancer, treatment can be challenging. At an age characterized by the beginnings of independence, the increased reliance on parents that accompanies a cancer diagnosis often complicates care. Treatment is also likely to interrupt important life events, including school, social activities, friendships, romantic relationships, and jobs.

In addition, the types of cancer that affect people in this age group often differ from those that affect either younger children, or older adults. When it is detected, cancer tends to be at a more advanced stage than other age groups.

Adolescents and young adults (AYAs) can be treated at a pediatric cancer center or an adult cancer center, depending on their age and the type of cancer they have.

How many AYAs get cancer?

For statistical purposes, the American Cancer Society describes cancers in adolescents as those that start between the ages of 15 and 19. About 5,000 adolescents are diagnosed with cancer each year in the US. Cancers in young adults are defined as those that start between ages 20 and 39. More than 60,000 young adults are diagnosed with cancer each year in the US.

Types of cancer

Because cancer more often occurs in older adults, no cancer that occurs in AYAs is really common. However, they can and do get many different types of cancer.

Cancers that occur in adolescents include:

Cancers that occur in young adults include:

Signs and symptoms

Many signs and symptoms are more likely to be caused by something other than cancer. Still, these symptoms in AYAs – especially if they don’t go away or they get worse – are a reason to see a doctor.

  • An unusual lump or swelling in the neck, belly, testicle, or elsewhere
  • Unexplained tiredness and loss of energy
  • Easy bruising
  • Abnormal bleeding
  • Ongoing pain in one part of the body
  • Unexplained fever or illness that doesn’t go away
  • Frequent headaches, often with vomiting
  • Sudden eye or vision changes
  • Loss of appetite or unplanned weight loss
  • A new mole or other spot on the skin, or one that changes in size, shape, or color

Cancer in AYAs  can be hard to treat

When cancer is found in adolescents and young adults, it’s often at a later stage than in either younger or older people with cancer. There are several reasons for this.

Most young people tend to be fairly healthy, and may not go to the doctor unless they feel they really need to. It’s also a time when spending time with friends, dating, working, and school take priority over health concerns. People in this age group may not even have a regular doctor. And even when young people do go to the doctor, cancer is not usually high on the list of probable causes for symptoms like pain or tiredness – because it’s more likely that something else is causing it.

According to Abby R. Rosenberg, MD, MS, Medical Director, Adolescent and Young Adult Oncology, Seattle Children’s Hospital, this is also the age group least likely to have medical insurance. Rosenberg says they tend to seek medical attention later, when the cancer is more likely to have spread. And she says once treatment is finished, they are less likely to return for follow-up visits. She says part of that is due to a lack of insurance, and part is just the way young people are.

AYAs are also less likely to enroll in clinical trials, which Rosenberg says is necessary to making improvements in AYA cancer treatment. However, she says this is changing as more pediatric cancer trials are expanding to include older age ranges.

Consider a pediatric cancer center

Depending on their cancer type, AYAs can often choose whether to go to a pediatric cancer center or an adult cancer center for treatment. According to Rosenberg, a pediatric cancer center is likely to have doctors with more experience treating children’s cancer types and support staff geared toward young people’s needs. These may include child psychologists, art and music therapists, and school teachers. Pediatric cancer centers also take a family approach to decision making, which is appropriate for many young patients who still rely on their parents for financial support, emotional support, or both.

Pediatric cancer centers treat patients with pediatric cancer types, including some types of leukemia, lymphoma, brain tumors, and bone cancers, up to age 21, 25, or 29, depending on the center. However, older AYAs with jobs or families of their own may have a more difficult time traveling to go to a pediatric cancer center for treatment, and may choose to be treated at a cancer center in their community.

Rosenberg recommends AYAs who are diagnosed with cancer have a consultation with an expert in their cancer type for help choosing where to go for treatment.

Family communication is important

According to Rosenberg, the role of the family and shared decision making is unique in the AYA age group. Teenagers are typically still relying on their parents to make decisions. Those in their 20s and 30s, even if they no longer live at home, often go back to asking parents for support when facing something as complicated and serious as a cancer diagnosis. Either way, says Rosenberg, it’s tricky and ethically challenging to navigate a way for patients to have a voice while still involving the parents. “Each and every family deserves special consideration about how those roles are manifesting,” says Rosenberg.

In her practice, Rosenberg says she sets ground rules that include getting young patients’ permission to speak alone with the parents sometimes. She also tells them, “You’re allowed to defer to your parents when making decisions, but I need to hear that from you.” She says AYAs need reassurance that they have a role in their care, they have support, and they have people who can speak on their behalf.

Late effects

There is no question that cancer in AYAs interrupts their lives at a crucial time. Rosenberg says, “This is the part of life that is normally characterized by developing milestones like asserting identity, separating from parents, figuring out who you want to be, grappling with body image, who you are, existential questioning, all of those things are really hard.”

Because of this, she says people diagnosed in this age range are more likely than their peers without cancer to develop mental health problems, are less likely to go to college and get married, and if they get a job are likely to get paid less.  She says the medical community is beginning to study and understand the ways cancer can disrupt AYAs’ life processeses and the long -term effects of those changes.

Depending on the type of cancer, the specific cancer treatments and doses used, and age at the time of treatment, long-term physical side effects can happen. Some may not show up until months or years after treatment ends. It’s important to discuss with the medical team what side effects are possible and whether there are ways to prevent or lessen them. Possible side effects include:

  • Impaired fertility (ability to have children) in both women and men
  • Increased risk of developing another cancer later in life
  • Heart or lung problems (from certain chemo drugs or radiation to the chest)
  • Hearing or vision problems (from certain chemo drugs or radiation to the head)
  • Problems with other organs, such as the kidneys or bones
  • Pain or swelling in parts of the body
  • Hormone deficiencies

Because of the risk of side effects, it’s important for young people to stick to their follow-up plan after treatment ends, including all exams and tests.

Guidelines

The National Comprehensive Cancer Network (NCCN) has guidelines designed for adolescents and young adults who are dealing with cancer. These guidelines can also be helpful for caregivers, family, and friends. They include information related to diagnosis, treatment, side effects, and survivorship.

To help raise awareness of late effects and improve follow-up care of young cancer survivors throughout their lives, the Children’s Oncology Group (COG) has developed long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. These guidelines are written for health care professionals, but can help patients and parents know what signs and symptoms to watch for, what types of screening tests should be done to look for problems, and how late effects can be treated. 

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