FACTS ABOUT CHILDHOOD CANCER

When diagnosed early enough, and treated with the appropriate protocols, up to 80% of childhood cancers are curable.
However, today only 20% of the world’s children benefit from advanced medical care.


Children living in the underdeveloped countries account for 80% of the world’s population of children.
Some of these children have cancer and are currently denied the right to hope for a cure.

8 Myths and Facts of Childhood Cancer Survivor

Children with cancer and childhood cancer survivors pose a health risk to other children/adolescents. They are disease carriers.

FACT
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.

Childhood cancer survivors are “genetically inferior” and are unable to have children.

FACT
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.

Childhood cancer survivors have a short life.

FACT
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.

Childhood cancer survivors generally do poorly in school and during employment.

FACT
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.

Childhood cancer survivors are socially challenged and generally have poor interpersonal and relational skills.

FACT
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.

Childhood cancer survivors are cured and no longer need continuing, follow up care.

FACT
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.

Childhood cancer survivors will have a miserable, sad and dismal future. They can never have a normal life.

FACT
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.

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.

 FACT
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.

Please remember,
when searching for information on the internet…

  • that every child with cancer regardless of financial or social class, race or native origin deserves access to the best possible treatment and medical care,
  • results may include links to information related to adult cancers; these are often quite different to childhood cancers even though they may have identical or similar names,
  • results may include information intended for different audiences; for example information for oncologists often assumes a great deal of prior knowledge and specialist education,
  • the search term may include a word that is spelt differently in American and UK English (eg. Leukemia vs. Leukaemia, tumor vs. tumour),
  • the quality of information on the Internet is variable,
  • users should be aware of source reliability issues.

Parents are strongly advised to discuss their information requirements with their doctor, who knows their child’s specific details.

Children with cancer need everyone’s help!

Facts on survivorship

THE DECLARATION OF DUBLIN, IRELAND

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.
Survivors of childhood cancer may develop medical and psychosocial late effects that severely impact their quality of life. Therefore, comprehensive long-term follow-up care is essential.
We ask that adequate long-term follow-up clinics are established, where survivors can have access
to personalized follow-up care. We ask for more research on late effects so that survivor care services can be improved.
Inadequate transition from childhood cancer care to adult medical care can result in a lack of knowledge and understanding of the impact and consequences of childhood cancer by the treating health professional(s). It is essential that these health professionals have a thorough understanding of the needs of cancer survivors. We request for full disclosure and sharing of our medical history and potential risks to our current and future health.
We emphasize the importance of trustworthy and empathetic psychosocial support during and after treatment. We ask all involved with our long-term care to be forthcoming and honest with us and to take our issues seriously.
In some countries, survivors are stigmatized and experience discrimination. We ask for equal opportunities in society including, but not limited to, education, employment and insurance.
Although cancer is a major cause of death amongst children around the world, it is important to convey to the general public that childhood cancer is often curable and that the survivors’ population is increasing globally each year. We urge you to work with us to educate the general public in order to dispel misconceptions and myths about childhood cancer.
With the support and commitment of all stakeholders, childhood cancer survivors can be actively engaged in society and live their lives to the fullest.

Dublin, October 18th, 2016

EXPLORING LATE EFFECTS

MANAGING LATE EFFECTS