Cutaneous Neurofibromas

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Your doctor has determined that you have one or more cutaneous neurofibromas, which are benign skin growths that arise from nerve connective tissue. They are not cancer and do not normally increase the risk of developing skin cancer.  Cutaneous neurofibromas can occur at any time of life, although they often appear between the ages of 20 and 30.

About the Condition

The skin is the largest organ of the body. Its top layer is the epidermis, which provides protection against the environment. The second layer of the skin is the dermis, which supplies blood, oxygen, strength and support. Underneath the dermis is the hypodermis, or subcutaneous fat layer, which provides an ongoing blood supply to the dermis.

Cutaneous neurofibromas occur when cells in the covering of a nerve (the nerve sheath) in the skin form a slow-growing, soft and usually painless growth, or tumor. These normally benign, or harmless, tumors can vary in size, are flesh-toned and have broad or stalk-like bases.

Cafe au lait spots, which look similar to the color of coffee with milk and can range in size from small to very large, are another type of cutaneous neurofibroma. They typically develop on the chest, back, pelvis, elbows and knees, although they can appear on many other parts of the body.

In addition to cutaneous neurofibromas, there are three other main types of neurofibromas, which can occur anywhere in the body except the brain and spinal cord:

•  Subcutaneous neurofibromas, which lie deeper under the skin and can sometimes be tender
•  Deep nodular neurofibromas, which involve tissues and organs underneath the dermis
•  Diffuse plexiform neurofibromas, which have branches that penetrate normal tissue

Treatment Options

The usual treatment for cutaneous neurofibromas is removal by a doctor, which may be accomplished in one of a few ways. In some cases, reconstructive surgery using a skin flap or graft may be required. The following treatment possibilities are available:

Excision Cutting out cutaneous neurofibromas with a scalpel (excision) is the most often used method of removal. In some cases it may also be necessary to remove the nerve.

Radiation Therapy Radiation therapy can reduce cutaneous neurofibromas by using a high energy X-ray machine to direct radiation at the tumors.

What You Can Do

Cutaneous neurofibromas rarely come back after they are removed. If you have any new growths or related abnormal sensations such as tingling, promptly report them to your doctor.

To maximize your health and minimize your risk of ever developing skin cancer, you should strive to prevent skin damage from ultraviolet (UV) ray exposure. General steps you can take include:

•  Avoiding the sun, especially between 10 a.m. and 4 p.m. when UV rays are the strongest
•  Using SPF 15 or higher sunscreen that contains avobenzone (Parsol 1789), titanium dioxide and/or zinc oxide, applying it 20 minutes before going outdoors and again every two hours, or immediately after swimming or sweating
•  Wearing a wide-brimmed hat and 100% UV-blocking sunglasses when outdoors
•  Avoiding tanning salons and other UV tanning devices
•  Visiting your doctor regularly for skin cancer screenings

Additional Resources

American Academy of Dermatology, 888.462.3376,

This patient resource sheet is provided to you as a service of CBLPath® and is intended for information purposes only. It may not fully describe all aspects of your diagnosis and is not meant to serve as medical advice or a substitute for professional medical care. Your physician can provide you with a thorough explanation of your diagnosis and appropriate treatment options, which may vary. Only you and your physician can determine your best treatment plan.

Updated 9.07