Hair loss
Alopecia or hair loss is almost inevitable with most of the treatments for cancer in children and young people (CYP) and this can be one of the most challenging aspects of the cancer diagnosis for the patients and their parents/carers. Hair loss with chemotherapy is usually total (all body hair) although scalp hair is more severely affected as the hair follicles of the scalp are the most rapidly growing – up to 90% of them can be in a phase of rapid growth at any time [1].
It is important to reiterate that the hair will grow back, however it may re-grow a different colour and texture. Hair loss with radiotherapy (for brain tumours) is local to the beam site and dose and may not grow back. All patients are offered high quality wigs. Older children and teenagers may be able to access a “real hair” wig. They are encouraged to go for a wig-fitting before they lose their hair, enabling the hairdresser to see what they look like naturally, thus allowing time for the wig to be made. Some children usually the younger ones are happy to have a range of hats or bandanas. It is important that professionals do not underestimate the impact that hair loss and its anticipation has on a child or young person and their family.
Usually the hair starts to fall out three-five weeks after their first chemotherapy, although the rate and extent to which this occurs is very individual with some drugs causing worse alopecia than others. For some, alopecia is almost total in the space of 24-36 hours, while for others the hair just thins. At the first sign of hair loss (or before) we often advise to cut it short, or brush it out, to avoid the distress of getting hair everywhere. There is some, less noticeable, hair loss after every cycle, so the alopecia effects accumulate. Hair re-growth starts to show within four weeks of drugs (that cause alopecia) ceasing.
Nail changes
Nail changes with chemotherapy can include infection, discolouration, banding, transverse ridges, oncholysis (detachment of nail bed) [2]. Of these, the most frequently seen in the child and young person age group is ridges. These are temporary side-effects and will resolve slowly after treatment.
Body image
Many children and young people with cancer will experience changes in their body image as well as hair loss. Almost all will have a central venous access device in their chest and some will have a naso-gastric tube. There can be weight loss due to lack of appetite, weight gain due to steroids, and scars following biopsy and surgery. A few patients with bone tumours may require amputation of a limb.
All of these things will affect the picture the child or young person has in their mind about how they look and therefore a knock-on effect into how they feel. All ages can be deeply affected by this. It is important not to underestimate the effect that altered body image can have on children and young people. Acknowledging with them (and their family, as appropriate) that they may be experiencing difficult emotions is important.
All of the above issues are particularly acute in young people, where it has a huge impact on self-esteem / social acceptance and development of personal identity at that particular age, when the effects of puberty on changing body shape is already so closely scrutinised by self and others.
It is advisable to discuss physical changes in the child or young person with siblings, extended family and friends before they visit, especially if they have not seen them in a while, so that they know what to expect. If siblings can visit frequently, changes will not be so apparent.
It is also a good idea to ensure that the possible changes to the child or young person’s physical appearance are discussed with their class at school, before they return to school, as in some cases the child or young person will have changed beyond recognition. The class should be given the opportunity to ask an adult the questions they may have. This allows them the opportunity to address their concerns in a safe and supportive environment, before their classmate’s return.
There is a CLIC Sargent school pack to assist teachers in talking to the class and it can be arranged for the Paediatric Oncology Outreach Nurse Specialist (POONS) or CLIC Sargent Social Worker to also help families and young people liaise with school. Teenage Cancer Trust (TCT) has a schools programme with a dedicated staff who can visit schools and give talks. Schools are always asked to allow the child or young person with cancer to wear a bandana or hat, whatever they prefer (many prefer to wear a hat or bandana, rather than their wig). Schools must ensure that this permission is communicated to all members of staff in a school, especially if it is a large school. CCLG produces a booklet called 'Welcome back' to support teachers and school staff who are helping a child to return to school following a diagnosis of cancer.
Further information and resources
From CLIC Sargent
Your appearance for children
How you look and feel for children
Relationships and sex for young people
From CCLG
Contact magazine Spring 2017 Changes in body image and appearance
Other resources
JTV Cancer Support Young people share their experiences of cancer
Little Princess Trust A charity providing real hair wigs for children and young people with cancer
Macmillan Cancer Support Information about appearance and body images
Coping with hair loss From Macmillan Cancer Support
Look Good Feel Better International charity that arranges make-up days for teenagers and young adults
Find Your Sense of Tumour Support programme from Teenager Cancer Trust
Bandanas for the Brave Charity providing bandanas and other support for children and young people with cancer
References
[1] Nathan M. and Tomlinson D (2010) Skin: Cutaneous Toxicities. In Tomlinson D. and Kline, N.E. (Eds.). Pediatric Oncology Nursing. 2nd Ed. London: Springer.
[2] VIiale, P.H. (2006) Chemotherapy and cutaneous toxicities: implications for oncology nurses. Seminars in Oncology Nursing. 22(3). p101-117.