CANSA Highlights Need for Support of Teen cancer Survivors
16 August 2018 – As part of Childhood Cancer Awareness Month, CANSA turns the spotlight on raising awareness of symptoms and making parents and guardians of children / teens diagnosed with cancer, aware of avenues of support available.
In most cancers in children and teens, there are no known risk factors and the focus therefore needs to be on raising awareness of signs and symptoms of cancer to aid early diagnosis. #EarlyDetection
A particular focus for CANSA is that of the teenage cancer Survivors (patients). 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.
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. View Infographics
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.”
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.”
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
CANSA Can Help
The CANSA Tough Living with Cancer (TLC) children/teens’ support programme embraces a holistic approach to include the emotional and social well-being of parents (guardians), children or teens and their siblings. Sharing of cancer related information; counselling, support groups, assistance with regards to prostheses, ports, broviacs, medical equipment, hospital / ward support programmes, food & basic essential parcels to families in need and accommodation for parents (guardians) near treatment centres at TLC Lodges (Polokwane, Pretoria and Durban), form part of the service offering.
According to Cara Noble, CANSA’s Service Delivery National Relationship Manager, “Teenagers are stuck in the middle and are old enough to have a better understanding of what is happening to them, but at the same time, they’re still children and struggle with how to cope and process their current reality. CANSA’s TLC support services are vital to these children and their families, they need to know that they are not alone. We encourage the community, family and friends of families that have a teenager or child with cancer to be kind, supportive and compassionate. It’s just as hard for the parents and siblings as it is for the patients to be on this journey, and they need your consideration as well.”
CANSA TLC also supports the child who has a parent or sibling that has been diagnosed with cancer who sometimes, has become a caregiver. Parents or guardians needing support are encouraged to contact their local CANSA Care Centre and can also join the CANSA TLC Childhood Cancer Support Group on Facebook, where they can connect with others in a similar position. *
* Please note that services will vary in different provinces
For more information, please contact Cara Noble, National Relationship Manager Service Delivery at CANSA, email email@example.com or call 031-205 9525 or mobile 083 784 5596.
CANSA offers a unique integrated service to the public and to all people affected by cancer. CANSA is a leading role-player in cancer research and the scientific findings and knowledge gained from our research are used to realign our health programmes, as well as strengthen our watchdog role to the greater benefit of the public. Our health programmes comprise health and education campaigns; CANSA Care Centres that offer a wide range of care and support services to those affected by cancer; stoma and other clinical support; medical equipment hire, as well as a toll-free line to offer information and support. We offer a Tele Counselling service in seven languages free of charge. We also supply patient care and support in the form of 8 CANSA Care Homes in the main metropolitan areas for out-of-town cancer patients and CANSA-TLC lodging for parents and guardians of children undergoing cancer treatment.
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