CCI Survivors.
a future global network
The survivors are an important group within CCI. Not only are they a sign of hope for the newly diagnosed, but they are young people with specific needs that must be addressed. Although there are already local and regional groups of survivors, in most of the countries / regions there is no structure that survivors can turn to for support. So, after a first meeting in Ottawa with some survivors from different countries, the Board felt the time had come to set up a global structure that would allow survivors from all over the world to exchange knowledge and experiences.
Group objectives
To share knowledge and resources between survivors, patients, parents and health personnel.
To create awareness about childhood cancer survivorship.
To discuss and find solutions for different realities, global survivorship challenges and global opportunities.
To create a sense of belonging.
To create a platform for survivors to inspire each other.
To help provide peer support and empowerment.
To increase the quality of life and care for those affected by cancer.
To promote an equitable health care system for all.
We need you!
We are already working with a group of survivors from all over the word, and our medium-term objective is to have a local structure of survivors at least inevery country where CCI has a member organisation.
We need, therefore, to identify dynamic survivors interested in building this global network. The CCI member organizations are a source of privileged information, as they are the ones who will be able to identify the best people for this important task. We therefore ask for your collaboration. All information can be given or requested by email to Joao Braganca by filling out the form below.
Our Mission
The MISSION of Childhood Cancer International Survivors is to bring together childhood cancer survivors to share resources and experiences and provide information in order to support and develop childhood cancer survivor groups and organizations everywhere in the world.
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Support the implementation and development process of national and local survivor groups.
Connect with professionals to provide information on important issues faced by childhood cancer survivors.
Assist in the establishment of mentoring programmes.
Energise and inspire survivor groups worldwide.
Improve the care for survivors and to represent and strengthen the voice of survivor groups.
Further develop the network of survivor groups around the world.
8 Myths and Facts about Childhood Cancer Survivors.
Myth 1
Children with cancer and childhood cancer survivors pose a health risk to other children/adolescents. They are disease carriers.
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Childhood cancer is not contagious. It is not an infectious disease. Neither is it a virus that can be transmitted or transferred by interaction. Thus, it is safe for other children and teens to play, socialize, interact with kids with cancer and childhood cancer survivors.
The reality is that children/adolescents with cancer who are immuno-compromised (i.e. have a weakened immune system during treatment), are at risk for catching the colds, measles, mumps, chicken pox, other common childhood illnesses from other kids.
This is why you see some of them wearing masks—to protect themselves. This is also why parents or carers oftentimes isolate their kids from large groups or public gatherings, when they know their kids are vulnerable.
Myth 2
Childhood cancer survivors are “genetically inferior” and are unable to have children.
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While some childhood cancer survivors may face fertility and reproductive health challenges, this is not the case (is not true) for the majority of childhood cancer survivors.
The type of childhood cancer that they were treated for and the treatment protocols that were followed will influence the impact of childhood cancer on the survivors’ fertility and reproductive health.
Myth 3
Childhood cancer survivors have a short life.
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Studies have shown that childhood cancer survivors are at increased risk for late effects and secondary cancers; however, reductions in life expectancy depend on: a) how timely the cancer diagnosis was; b) what the initial treatment was; and c) the appropriateness of the treatment received. The nature and severity of the subsequent late effects will also influence life expectancy.
Myth 4
Childhood cancer survivors generally do poorly in school and during employment.
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While research has revealed that 2 out of 3 childhood cancer survivors suffer from “late effects,” these late effects do not necessarily affect cognitive and learning capacities.
Anecdotal reports indicate that childhood cancer survivors are determined and motivated to do well. There are many inspiring stories around the world of childhood cancer survivors who are successful, high performing achievers and/or make noteworthy contributions to their communities, despite life-threatening or life-limiting conditions.
Myth 5
Childhood cancer survivors are socially challenged and generally have poor interpersonal and relational skills.
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In most countries, during treatment, children/adolescents with cancer are separated from their peers and unable to engage in regular schooling and other activities. However, numerous studies have shown that as a consequence of the challenges they faced and their experiences, survivors tend to have better coping and increased resiliency. This is most true in countries where there are psychosocial support programs for children with cancer and childhood cancer survivors and/or where there are programs and services that help create a supportive and nurturing environment for children undergoing treatment for cancer.
It should be noted however that there have been emerging exploratory studies indicating that some childhood cancer survivors exhibit behaviour associated with PTSD (post traumatic stress disorder). This further emphasizes the need for robust follow up care, safe spaces (e.g. places where the kids can “hang out“ and be with peers who accept and understand them etc.) and strong circles of support for kids with cancer and childhood cancer survivors. This is why a number of childhood cancer foundations and patient support organizations provide alternative education facilities, in hospital or in their offices.
Myth 6
Childhood cancer survivors are cured and no longer need continuing, follow up care.
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Continuing follow up care is very important for childhood cancer survivors. Studies have revealed that childhood cancer survivors are at higher risk for a secondary cancer, or a debilitating health condition related to their initial cancer treatment. Therefore, vigilance and regular monitoring are critical for early identification and treatment of any health challenge or impairment.
Childhood cancer survivors and their families should be informed about the facts and details of their cancer, the expected health and lifestyle consequences of their treatment and the required monitoring/regular follow up.
Childhood cancer survivors should be provided with age appropriate information and enabled to understand their conditions. Teens and young adults need to feel empowered and able to take charge of their own health.
Myth 7
Childhood cancer survivors will have a miserable, sad and dismal future. They can never have a normal life.
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Most childhood cancer survivors return to normal school life and activities after treatment. They effectively reintegrate with their family, friends and communities. In other cases, the survivor and their families adapt and modify their lifestyle to achieve the “new normal.”
Adjustment to the “new normal” – life after cancer, becomes much easier more fulfilling and happier, with a circle of care provided by an understanding and supportive network of family members, teachers, carers, community of peers and friends.
Myth 8
Childhood Cancer Survivors will always carry the stigma of cancer in their adult life. They will always be discriminated against and looked down on for marriage, employment and in social circles.
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In most countries, childhood cancer survivors are looked up to and viewed as heroes and warriors who courageously overcame cancer. Childhood Cancer survivors are living proof and testimony that childhood cancer is curable. They are the best ambassadors to bring hope, motivate and inspire other survivors, new patients and their families.
In countries where discrimination and stigma still exist, survivors and their supporters need to stand up and speak out. They need to challenge the stigma, share their stories and show the reality of their new lives.
Studies have shown that education, information and real life stories are powerful tools to break stigma and eliminate discrimination.
Translations
Translations of 8 Myths and Misconceptions
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English [ download + ]
Spanish [ download + ]
Serbian [ download + ]
Indonesian [ download + ]
Portuguese [ download + ]
Japanese [ download + ]
Declaration of Dublin
Surviving childhood cancer can be a lifelong challenge, regardless of geographical, religious, ethnic, financial and cultural backgrounds. We, the global CCI Survivors Network, ask medical and psychosocial professionals and all other stakeholders to acknowledge the challenges and needs of survivors.