Teen Interrupted – Let’s Support Teens with Cancer
Teen Interrupted – Let’s Support Teens with Cancer
What would you discover if you could explore the brains of typical teens? Anxiety about how they look or whether they are accepted by their peers; discomfort with the way their physically changing body makes them feel; figuring out what they think is important, and right; how to stand up for their beliefs when they crave acceptance from peers; handling new responsibilities and tougher expectations from parents and teachers; passion for a particular career path or complete confusion about what to do with their future; rebellion against limitations that seem unfair; longing for independence and freedom…
You could expect to find most of these and more. Now imagine throwing into this mix – a cancer diagnosis
This incredibly complex stage of life now includes dealing with isolation from peers and family, getting behind with studies, losing sight of personal goals, fear of being viewed as inferior, fear of dealing with the harsh side effects of treatment, fear of the loss of a body part or future infertility, or fear of dying.
It’s clear that teenage cancer Survivors (patients) need much understanding, care and support.
SA Teen Survivor Facts
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.
SA has a lack of wards specifically for teenage cancer Survivors, with no clear guidelines when to transition children to adult oncology wards. This can be distressing for teens especially after the relatively protective environment of a childhood ward.
Based on the most recent statistics available, Hodgkin and Non-Hodgkin Lymphoma remain two of the leading cancers among teens (10 to 19 years) in South Africa.
This accounts for nearly a quarter of all the cancers affecting teens with a five-year survival rate of 79% in South Africa.
A weakened immune system due to infection with Human Immunodefiency Virus (HIV), increases the risk of developing Non-Hodgkins Lymphoma.
Hodgkin-Lymphoma is a highly treatable cancer that affects adolescents and young adults, however, the survival rate 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. 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 Dr Jennifer Geel, a CANSA funded researcher, to contribute meaningfully to the research study to improve the lives of children, teens and young adults diagnosed with Hodgkin Lymphoma in South Africa.
Dr Geel may be contacted at jennifer.geel@wits.ac.za.
Know the Signs
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
Refer to our Slide Show and Infographics for more information regarding the symptoms of Lymphomas & other cancers affecting children and teens:
How to Support Teens through Diagnosis and Treatment
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.
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.”
Moslinah is a teenager of 15 years. Although she lost both parents at a young age, she is a strong self-assured girl. Being diagnosed with osteosarcoma in 2017 did not discourage her fighting spirit. She wishes to encourage other teenagers who battle by sharing her story, saying that she is completing chemo soon. As soon as the new year starts, she will be back at school to catch up what she has missed for the past two years.
A 17 year old girl, with Ewings Sarcoma, from Mossel Bay says to encourage teens with cancer in the following way:
“It’s hard to know how to respond when someone you love — someone your own age — is diagnosed with cancer. It can be frightening, confusing, and may bring on some heavy thoughts about life and death.
You might even struggle with the temptation to pull back from your friendship so you can avoid the uncomfortable feelings you have. But your friend needs you now more than ever.
Teens with cancer often feel isolated and alone, 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 or wish this weren’t happening. Even if you aren’t sure what to say to your friend, just being there to show your support will mean so much. If distance or your schedule makes it hard to be there in person, stay in touch by sending notes and cards and by emailing, phoning, or texting.
People with cancer, understandably, are often sad, anxious, and afraid. On top of that, some treatments have side effects like fatigue or mood swings. If you show up to visit and your friend seems distant, angry, or less than enthused, try not to take it personally. Don’t give up; your friend is going through a lot. Come back again tomorrow and chances are things will be better.
Don’t wait on me to call you if I need anything. Please call me every once in a while and set up a date and time to come over.
Let me experience real emotions. I still have normal moods and feelings in response to life events. If I’m angry or upset, accept that something made me mad and don’t write it off as the disease
Ask me “what’s up” rather than “how do you feel.” Let’s talk about life and what’s been happening rather than focusing on my illness.
Forgive me. There will be times when the illness and its treatment make me “not myself.” I may be forgetful, abrupt or hurtful. None of this is deliberate. Please don’t take it personally, and please forgive me.
Just listen. I’m doing my very best to be brave and strong, but I have moments when I need to fall apart. Just listen and don’t offer solutions. Embrace the now with me.
I need a little time alone. Sometimes I need a little solitude. It gives me the chance to take off the brave face I’ve been wearing too long, and the silence can be soothing.”
How 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.
CANSA TLC also supports the child who has a parent or sibling that has been diagnosed with cancer who sometimes, has become a caregiver.
* Please note that services will vary in different provinces
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.
Portia Masango, mother 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 ‘mommy 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 transferred to Steve Biko Academic Hospital. Then I got to understand what having a child with cancer means: chemo, the nausea, loss of appetite, losing weight, being weak,s ometimes 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 tumour was still there! Yet somehow having the strength to go on.Today a year later I’m grateful for everything thus far. For him 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 for the support from the CANSA TLC Childhood Cancer facebook support group – it’s much easier when you talk to people who really understand what you talking about. I truly am grateful for it all.”
CANSA recently became a proud member of the International Children’s Palliative Care Network (ICPN)…
Paediatric Fundraiser for CANSA TLC
Each September the Vlok family host an online fundraiser to support CANSA’s TLC Programme and children / teens affected by cancer. This is their 6th year…
Thanks to the public’s generosity R66 400 has been raised. Help us reach the target of R75 000.
Funds raised in 2018 will help CANSA TLC afford life changing medical port-a-cath and broviac implants, as well as critical nutrition packages for South African paediatric cancer patients. Read why treatment is less traumatic with port-a-cath and broviac implants.