Paediatric melanoma
Disease management
The World Health Organization has classified UV exposure as a class I carcinogen as UV light causes direct DNA mutations that are correlated with melanoma. This “Call to Action” is centred around five goals: (1) increasing sun-safety behaviours, (2) informing the public about risks and options, (3) pushing policies for safe habits, (4) reducing the harms of indoor tanning, and (5) increasing monitoring and surveillance of outcomes.14
Disseminating information of proper sun-protective behaviours (using sunscreen, staying in the shade, wearing wide-brim hats, and wearing protective clothing) is important to prevent the early acquisition of sunburn and UV-related DNA damage. Multicomponent interventions incorporating printed materials, interactive multimedia, and distribution of sun-protective products and community-wide and school-based prevention programs have been shown to increase adherence to clothing and sunscreen recommendations.15,16
Fertility for children with cancer
Depending on cancer that your child has, it might be considered to apply a fertility preservation method. This can be especially relevant when your child is receiving radiotherapy and/or chemotherapy to treat the tumour. If needed, different ways of preserving fertility in children are available for girls and boys and were recently established by the ASCO (American Society of Clinical Oncology) in 2018. An adapted version for patients can be found here.
Nutrition
Nutrition in children with cancer is essential to maintain their quality of life, prevent delays in treatments and manage side effects. Each child with cancer has different nutrition needs. A registered dietician is a key member of the healthcare team. Dieticians can give advice about good nutrition and create a personal nutrition care plan for your child in order to maintain good nutrition during the cancer journey.
Further information and resources can be found at the Canadian Cancer Society on nutrition for children with cancer.
Palliative care
It may be necessary at some point for XP patients to need the palliative care team included in their case. Palliative care is an interdisciplinary approach for people with life-limiting illnesses. It focuses on providing relief from the symptoms, pain, physical stress, and mental stress at any stage of illness. The goal is to improve the quality of life for both the person and their family.
Palliative care is provided by a multidisciplinary team of physicians, nurses, physiotherapists, occupational therapists, speech-language pathologists and other health professionals who work together with the referred specialist to provide additional support. It is appropriate at any age and at any stage in a serious illness and can be provided as the main goal of care. Although it is an important part of end-of-life care, it is not limited to that stage. Palliative care can be provided across multiple settings including in hospitals, at home, as part of community palliative care programs, and in skilled nursing facilities. Interdisciplinary palliative care teams work with people and their families to clarify goals of care and provide symptom management, psycho-social, and spiritual support.
Medications and treatments are said to have a palliative effect if they relieve symptoms without having a curative effect on the underlying disease or cause.
Further information and resources are available at our curated content for Paediatric Palliative Care.