Chemotherapy used for retinoblastoma causes some or all body hair to temporarily fall out.
Radiation will cause hair to fall out only in the treatment field. This may include eye brows and lashes in orbital exposure.
Treat your child’s hair gently to protect it. Use a mild shampoo designed for damaged hair, and a brush with very soft bristles.
Do not use bleaches, dyes, perms, curlers, blow dryers or hair spray. Avoid anything that can damage hair, such as brushing it too hard or plaiting it.
Preparing for Hair Loss
The time before hair begins to fall out varies from a few days to a few weeks. You will probably notice more hair in your child’s brush or comb.
Hair often comes out overnight. Wearing a hairnet or turban overnight, or placing a flannel towel over the pillow, collects hair that is falling out.
To minimise trauma, some parents cut their child’s hair short before, or as soon as it starts coming out. If your child is old enough, ask what she would prefer. Some parents shave their heads so the child does not feel alone or different.
Protect your child’s scalp from the cold and sun with some form of covering or sun-block (SPF50+). Use a gentle moisturiser daily.
Help Your Child Cope
Acknowledge that hair loss can be traumatic for all children.
Reassure your child that hair loss is temporary.
Separate your feelings about baldness from your child’s feelings.
Allow your child to not wear head coverings. Let her know it’s okay to be bald.
Let your child choose a wig, hats, scarves or turbans. Some countries classify these as tax‑deductible medical expenses, and insurance may cover them.
If your child is school-age, advocate that she be allowed to wear head coverings to school if she wishes to do so.
Wigs
If your child expresses an interest in wearing a wig, ask whether she would like the style similar to her own hair, or radically different.
Use photographs and a sample of hair taken before hair loss to help find a good match of original colour and texture.
Take photographs of your child trying several wigs. You can look at the pictures together to help decide which style to go for.
Insurance may cover the wig if the doctor prescribes a wig prosthesis. They should include the medical reason, such as “alopecia due to cancer therapy.”
In the UK, the NHS offers wigs for cancer patients, but many people choose to buy from a private retailer. NHS vouchers contribute towards private purchase.
National cancer societies and some local cancer service organisations keep information about wig suppliers, and may offer free wigs. Locks of Love make wigs from donated natural hair, for children with cancer.
Hair Grows Back
Hair usually begins to re-grow 1-3 months after treatment ends. Occasionally, hair starts to grow back before the end of chemotherapy.
Hair may look different when it grows back. Sometimes it is thicker or a different colour. If it was straight before chemotherapy, it may grow back curly, or vice versa. These changes are unpredictable and not related to specific drugs.