Prevention

People with Gorlin syndrome are more likely to get multiple basal cell carcinomas (BCCs) over their lifetime. This means practicing safe sun habits is necessary. A basal cell carcinoma is a type of skin cancer that is more likely to develop on skin which is exposed to the sun. 

Before going outside:

Apply sunscreen to your/your child’s face and body (preferably sunscreen with SPF 30 or higher that contains zinc oxide and/or titanium dioxide). https://www.aad.org/public/everyday-care/sun-protection/shade-clothing-sunscreen/choosing-right-sunscreen

Cover exposed skin with sun-protective clothing, including a wide-brimmed hat and sunglasses. Some sun-protective clothes even have SPF built into the fabric. This is a great way to stay protected and feel stylish.

While outside:

When possible, spend your time in the shade, especially when the sun is at its strongest between 10 a.m. and 4 p.m.

Reapply sunscreen with SPF 30 or higher at least every 2 hours. If you/your child are swimming or sweating a lot, reapply sunscreen more frequently.

Wear sun-protective clothing with SPF protection.

Wear sunglasses.

If you/your child like the look of tan skin, try a self-tanning lotion. This is s safe option that can give you/your child the look you like without causing damage to the skin. Outdoor tanning / sun exposure or use of tanning beds/booths can increase the chance of developing skin cancer. It can also cause wrinkles earlier in life.

See your/your child’s dermatologist for regular full-body skin cancer checks, including checking skin that is not usually exposed to the sun. If the dermatologist does find signs of skin cancer, you/your child may be seen more frequently for follow-up visits.

It is common for people with Gorlin syndrome to not have enough vitamin D in their bodies. Vitamin D is important for bone health and for strengthening the immune system (the system in the body that fights against illness and germs).

Ask the care team if you/your child may need a vitamin D supplement in addition to eating a healthy diet.

Most adults get about 1,000-4,000 international units (IU) of vitamin D per day. Your/your child’s care team can provide personalized recommendations for how much supplemental vitamin D you/your child may need.

Radiation exposure can contribute to the development of BCCs in people with Gorlin syndrome. Radiation is commonly found in different imaging machines, like x-rays or computerized tomography (CT) scans. It can also be used to treat various types of cancer or shrink tumors. Unless they are necessary, try to avoid x-rays, CT scans, and radiation therapy. Make sure that your health care team is aware of this issue. An MRI scan is obtained without radiation exposure.