Supporting Teen cancer Survivors
A particular focus for CANSA is that of the teenage cancer Survivors (patients).
Did You Know?
- It’s estimated that at least two thirds of children with cancer, including teens, never reach a specialist treatment centre and that the majority of those that do, are unfortunately in the advanced stages of their illness.
- Cancers affecting younger people share general symptoms with other illnesses, which can result in a misdiagnosis and there needs to be a determined effort by government to educate parents, medical and clinic staff to be aware of symptoms.
- In teens especially, the warning signs of cancer may be attributed to growing pains associated with this developmental stage, or with normal sports injuries as teens tend to be active.
- The cause of most cancers affecting teens is not known. Current international data suggests 10% of teens diagnosed, may have a genetic predisposition to it and those with HIV are at higher risk for certain cancers such as Kaposi sarcoma and non-Hodgkins lymphoma.
- The top cancers currently affecting teens are non-Hodgkins, Hodgkins lymphomas, bone and soft tissue cancers (sarcomas), brain tumours, Kaposi sarcoma and leukaemia. Based on the most recent statistics available, Hodgkin and Non-Hodgkin Lymphoma remain two of the leading cancers among teens (10 to 19 years). This accounts for nearly a quarter of all the cancers affecting teens with a five-year survival rate of 79% in South Africa.
Parents and guardians need to be alert to symptoms that persist or recur repeatedly, as medical assistance should then be sought immediately. The St Siluan warning signs for cancer may be helpful in identifying symptoms. A list of questions to ask your health care professional if your teenager has been diagnosed with cancer, and tips to help support your teen may also prove useful.
Currently, adolescents are under-represented in the National Cancer Registry and the South African Children’s Cancer Registry, so the true incidence in SA is not known. Only that it is certainly higher than represented by these statistics.
Factors relating to lower survival rates, amongst others include HIV infection and advanced stage disease due to lack of early detection. In South Africa the lack of adolescent specific wards also has an impact on oncology care.
Dr Jennifer Geel, CANSA funded researcher, says, “A diagnosis of cancer is devastating for anyone, but teens are also coming to terms with rapidly changing life circumstances (puberty, high school, post school education, entry into the workplace, relationships, individuating from their parents, becoming adult members of society, etc.) and a diagnosis of cancer puts everything on hold. They struggle to manage themselves while their lives are threatened. There are high rates of depression among teen patients, but it’s often undiagnosed.”
Read blog by Cara Noble CANSA National TLC Manager: The Missing Middle – Being a Teen with Cancer in SA
Some teen Survivors share their challenges of living with cancer:
“I wish that everyone around me would stop talking about my illness like its taboo and focus on helping me get back to school,” says 15 year old Msogwaba from Mpumalanga, diagnosed with Plasmoblastic Lymphoma.
A young 17 year old in KwaZulu-Natal living with Ewing’s Sarcoma says, “I want my friends to see me as normal, not disabled, that they would understand how being diagnosed with cancer has affected my emotions, and that they would stay in contact.”
A 17 year old with Ewing’s Sarcoma, from Mosselbay advises, “Teens with cancer often feel isolated, especially if they’re in the hospital or away from school for long stretches of time. Visit as often as you can. Fight the urge to stay away because you feel awkward. Just being there to show your support will mean so much or stay in touch by sending notes and cards and by emailing, phoning, or texting.”
Geel adds, “Hodgkin-Lymphoma is a highly treatable cancer that affects adolescents and young adults, however, the survival for HIV positive patients, drops to approximately 45%. Nutrition is a major factor in whether a patient survives or not. Patients who present earlier do better.”
Lymphoma – Know the Signs
In order for patients to be diagnosed early enough to benefit from treatment, it’s important to know the signs, which can vary widely depending on where the Lymphoma is found in the body: Look out for enlarged lymph nodes (seen or felt as lumps under the skin); swollen abdomen (belly); feeling full after only a small amount of food; shortness of breath or cough; fever; weight loss; night sweats and fatigue (feeling very tired).
“The best chance of surviving Hodgkin Lymphoma is to be a part of the study being conducted at paediatric oncology units across the country. Any doctor who is treating a patient up to the age of 22 years old is encouraged to contact me to contribute meaningfully to the research study to improve the lives of children, teens and young adults diagnosed with Hodgkin Lymphoma in South Africa,” Geel advises. Contact Dr Geel at firstname.lastname@example.org
Read more about other types of cancer affecting adolescents and children here…