CANSA’s Tough Living with Cancer (TLC) Programme focuses on:
- raising awareness of cancers affecting children / teens and the importance of early detection
- providing tangible loving support, to youth and families affected by cancer
Children and teens diagnosed with cancer or affected by cancer (a family member has cancer) are supported, as we believe no child or family should have to face cancer on their own.
CANSA is committed to connecting people facing cancer with information, day-to-day help as well as emotional support they need in the communities where they live. Our aim is to ensure that cancer Survivors (patients) and their loved ones don’t have to face cancer alone; we’re here to support them through every step of their cancer journey.*
* CANSA is not aware of all children / teens diagnosed with cancer, since they go to multiple units across the country. Although we make regular contact in some identified wards where we have full time volunteer and staff support, we invite all oncology parents and / or legal guardians to contact us in order to register and become part of our Tough Living with Cancer (TLC) support groups. Any friends or family members of a family with a newly diagnosed child are welcome to share our information and to refer parents to us for support. All are welcome to join the CANSA TLC Childhood Cancer Facebook support group for children and teens with cancer, and to email email@example.com for support. A referral will then be made to a local CANSA Care Centre for further support.
International Childhood Cancer Day (15 February)
CANSA joins Childhood Cancer International, founders of International Childhood Cancer Day, celebrated globally on 15 February 2019 in raising awareness of childhood cancer & working towards lowering deaths, pain and suffering and supporting the World Health Organization’s (WHO) Global Childhood Cancer Target Goals. Media release | eNewsletter #EarlyDetection #CANSACares
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…
Early Detection Vital in Child & Teen Cancer
International Childhood Cancer Awareness month is celebrated in September each year. Gold ribbons are worn to help raise awareness worldwide.
In South Africa it is estimated that at least half of all children / adolescents with cancer, are never diagnosed due to misdiagnosis or ignorance of the symptoms of childhood cancer. Read more about the types of cancer affecting South African children and teens…
Slide Show & PPT: Childhood Cancer Awareness | Symptoms | Myths | CANSA TLC Support
How Can You Support Your Friend with Cancer?
Slide Show & PPT: How to Support Your Friend who has Cancer
CANSA TLC Support:
CANSA TLC strives to inform the public of the warning signs of childhood cancer to enable early diagnosis and to ensure that children are referred to Paediatric Oncology Specialists for treatment. #ChildhoodCancerAwareness #CANSAtlc
An incorrect diagnosis by someone less knowledgeable, can allow the cancer time to build up resistance to treatment. The quicker a child is diagnosed correctly, the better his or her chance of survival.
Myths surrounding childhood cancer also need to be debunked to ensure that children are referred to specialists without delay.
A young cancer Survivor, Thandi* and her mom Jessica*, were being rejected by their community. Jessica said at the time: “The lack of knowledge and understanding in our village is extreme. The majority still believe that my child is contagious and can harm them.” CANSA’s TLC Staff in Kimberley stepped in to offer support and information to their community. (*Names changed to protect privacy)
CANSA TLC embraces a holistic approach to include all aspects of physical, spiritual, psychological and social well-being of parents (guardians) and children / teens, through:
- sharing cancer related information
- offering support groups / counselling
- providing terminal & grief support
- prosthetic assistance
- ports (broviacs) to minimise trauma
- medical equipment / wheelchairs
- educational school programmes
- skills development
- volunteer training
- providing accommodation for parents (guardians) near treatment centres
- providing food & basic essentials parcels to families in need
CANSA TLC Facilities:
Currently there are 2 CANSA TLC Lodges, 1 CANSA TLC Ward and 2 CANSA TLC Support Rooms for children / teens and parents and families affected by cancer:
CANSA TLC PE Support Room in Port Elizabeth – tel: 041-373 5157
CANSA TLC Nicus Lodge on premises Steve Biko Academic Hospital in Pretoria. This includes the Brian Davey Step Down Unit which provides a family friendly environment where children can safely recover while their immune systems are being built up – tel: 082 073 2850
CANSA TLC Durban Lodge – tel: 031-205 9525
CANSA TLC Paediatric Oncology Ward in Pietersburg Provincial Hospital, Polokwane – tel: 015-297 1268
CANSA TLC Kimberley Support Room in Kimberley – tel: 053-831 2968
Do You or Your Child / Teen Need Support?
Parents in need of support are invited to join a TLC Support Group in their area (contact the nearest CANSA Care Centre), or help to establish one if one doesn’t exist, or contact Vera van Dalen, email: email@example.com or 082 073 2850 (office hours) or Cara Noble, email: firstname.lastname@example.org
Parents, families, and guardians can also join our Facebook Support Group: CANSA TLC – Childhood Cancer Support, to connect with others in a similar position.
Says Portia Masango, whose son was diagnosed with cancer: “Today marks exactly one year since my then 5 year old was diagnosed with cancer. I can still see Dr Khoza’s face when she said, ‘I’m afraid I’m gonna have to admit Tshegofatso, I need a CT scan done on him tomorrow, cos I suspect he has cancer.’
We were in Mankweng, a strange place, with no one we know around. The reality of it all never really hit me until we got transfered to Steve biko Academic. Then I got to understand what having a child with cancer means. Chemo, the nausea, loss of appetite, losing weight, being weak, sometimes feeling so helpless, feeling like just screaming. Being anxious, asking yourself: is he going to make it? The hope I had after completing the chemo cycles, only to do the CT scan and learn that the tumor was still there! Yet somehow having the strength to still go on.
Today, a year later, I’m grateful for every thing thus far: being able to attend school without major problems, just the occasional bleeding here and there, his glowing face despite chemo, still being able to play, slowly gaining back the weight, and the support from the CANSA TLC Childhood Cancer Facebook Support Group. It’s much easier when you talk to people who really understand what your talking about!”
Beyond Cancer – Model a Balanced Lifestyle to Your Child:
Childhood cancer Survivors need to continue with regular check ups. The treating specialist will offer dates for follow up visits and it is of utmost importance not to miss these appointments. Any risk for relapse or long-term side effects needs immediate attention.
After completion of treatment children / teens are able to return to school, some may take up regular activities excluding contact sport, and they can effectively reintegrate with family, friends and communities. While some children / teens may experience learning challenges or need to learn to live with a prosthesis, with the right support from educators and loved ones, the aim is to help each one to reach their personal goals and to achieve success.
It is important that they understand what they have been through, and feel empowered to take charge of their own well-being into the future. Parents can help by teaching them to:
- Adopt a balanced family lifestyle so that your child will continue to live on well into adult life
- Demonstrate SunSmart behaviour to your child
- Give your child the right to a smoke-free world – 2nd and 3rd hand smoke is also harmful!
- Avoid known carcinogens in the environment – help your child to identify these
- Vaccinate against HPV to reduce risk of cervical cancer & Hepatitus strains to reduce risk for liver cancer
- Teach your child about any risks they may face, at the appropriate time, so that they can identify unusual symptoms later in life – read more about Men’s Health and Women’s Health
Children / teens who have had cancer, are able to live a full, successful life. Where they may experience discrimination against them due to being a Survivor, later in life, they need to challenge this and speak out about it. There will always be ignorant people who believe myths and need to be informed of the facts.
Be a Gift to a Child in Need:
- Support the Vlok Family’s 7th Port / Broviac Fundraiser…
- Please make an online donation towards supporting our TLC Programme, so that we can help more children and families. Donations will assist with the provision of prosthetic support (children who have lost an eye or limb); the provision of wheelchairs; pain control implants and medical equipment.
- Donate basic items to TLC Families of young cancer patients…