Adolescent and Young Adult (AYA) Cancer
When the young get cancer
Adolescents and young adults have unique needs and require different treatments and care for cancer, says Dr Ivan Tham from Parkway Cancer Centre.
An adolescent and young adult (AYA) cancer patient is someone initially diagnosed with cancer between the ages of 15 and 39.
Though cancer is rare in this age group, more than 70,000 AYA patients are diagnosed with cancer annually in the United States. This is about five per cent of all cancer cases diagnosed. In comparison, there are about 11,000 cases of children's cancer diagnosed annually.
AYA patients are more likely to get certain types of cancer compared to older people, such as Hodgkin lymphoma, testicular cancer and some forms of sarcoma. Within the AYA age group, the cancer incidence can also vary. For the 15- to 24-year-old age group, leukaemia, lymphoma, testicular cancer and thyroid cancer tend to be more common. For those between the ages of 25 and 39, breast cancer and melanoma are more common.
The majority of cancers in AYA appear sporadically, without any known cause. Occasionally, the AYA patient could have a strong family history of cancer. For example, patients with BRCA1/2 mutations would have a higher chance of getting breast cancer.
Similarly, patients with the Li-Fraumeni syndrome (TP53 mutation) have a higher chance of getting some types of cancer such as brain tumours, breast cancer, or sarcomas. Some viral infections can predispose AYA in getting cancer. For example, the HPV (Human papillomavirus) is associated with cervical cancer. Rarely, cancers can also be caused by treatment for an earlier childhood cancer, e.g. radiotherapy or some types of chemotherapy.
A different group of patients
There is a higher risk of delayed diagnosis in this age group compared to older adults. Patients and doctors do not expect to diagnose cancer, and so the index of suspicion might be lower. There are also no specific screening tests for this age group.
AYA patients have unique needs because of their age; hence they should have access to a multi-disciplinary team of different healthcare professionals. For example, AYA patients could be grappling with psychosocial and/or socioeconomic issues, work or school commitments, fertility or childcare concerns, and possibly long-term side effects of cancer treatment.
Some researchers note that the cancer survival rates for this age group are not improving as fast as the rates for childhood or older adult cancers. This could be related to the fact that the rate of participation in clinical trials is also lower for this age group compared to other age groups.
For these reasons, the recently published National Comprehensive Cancer Network guidelines from the United States suggest that AYA patients be treated in specialist centres with expertise and resources to meet the needs of patients in this age group and to obtain the best treatment outcomes.
Tailored care needed
Typically, the cancer treatment will be tailored according to the age of the patient and the type of cancer. I find that taking some time to listen to the patient can go a long way to building a strong doctor-patient relationship.
Recent research has found that patients who trust their oncologist, or feel that their doctor understood their personal values, were able to make better decisions regarding their own treatment. Some patients may also want a second opinion about their treatment options. I would usually encourage this because this can help them come to terms with their cancer or clarify any doubts about the diagnosis or treatment plan.
Future fertility may not be immediately on the patients' mind, but this is an important consideration for this age group for both males and females. As different cancer treatments can affect fertility differently, I may refer AYA patients to fertility specialists for discussion before their treatment starts. There can be effective ways to preserve fertility. For example, sperm banking can be effective for males while embryo freezing or oocyte cryopreservation (egg freezing) are some options for females.
The patient's psychosocial needs also have to be considered. Many AYA patients are still in school or have just started their careers. They could be embarking on a serious relationship, or already married with young children. The additional burden of cancer diagnosis and treatment may be difficult to bear. Some patients require counselling or psychosocial support during this time.
Cancer treatment can be lengthy and is often disruptive to education or work. In my experience, many schools and employers are often willing to go the extra mile to support these patients during this difficult time and help them get back on their feet after treatment.
Support and survivorship
Many of the cancers are potentially curable. After active treatment, these patients should have access to physiotherapy or rehabilitation facilities where needed, to help them regain their physical health earlier. Genetic counselling should also be offered to some of these AYA patients with a family history of cancer.
I try to follow-up all my patients for many years. This is to manage any late side effects of treatment and monitor for relapse. I find it especially gratifying to see my patients reach significant milestones in their lives like graduation or marriage. Where possible, I also try to slip in health promotion messages like encouraging them to eat healthily or exercise regularly.
Through their whole cancer journey, AYA patients need support from family and friends. Additionally, there are support groups for cancer patients in Singapore, run by the Singapore Cancer Society (www.singaporecancersociety.org.sg) and other groups. There are also resources available on the internet such as Stupid Cancer (stupidcancer.org) and Cancer.Net (www.cancer.net/navigating-cancer-care/young-adults-and-teenagers/resources-young-adults-with-cancer).
Can we prevent cancers in the 15-39 age group? Leading a healthy lifestyle and stopping smoking should help. Vaccinations against some viruses associated with cancer such as HPV or Hepatitis B virus (HBV) will also prevent certain types of cancer.
The article above is meant to provide general information and does not replace a doctor's consultation.
Please see your doctor for professional advice.