Langerhans cell histiocytosis (LCH): Working to change pediatric cancer outcomes, one patient at a time

Langerhans cell histiocytosis (LCH) is a rare disorder where the body makes too many dendritic cells. Dendritic cells are a form of white blood cells. These cells play a role in the body’s immune system. LCH most commonly affects the skin and bones, but can involve any organ in the body, including lymph nodes, lungs, liver, spleen, bone marrow or brain.

Symptoms of LCH can vary depending on the part of the body that is affected. Some common symptoms include:

• Pain in the stomach or pelvis

• Lumps or lesions on the skull, upper or lower limbs, hands or feet, ribs, pelvis and spine 

• Skin issues, including a skin rash or cradle cap (a scalp rash often in infants)

• Ear pain or recurring ear infections

• Tiredness

• Fever or sweats

• Hair loss

• Yellow skin

• Vomiting and diarrhea

• Blood in the stool

• Enlarged liver or spleen

• Increased thirst

• Rapid weight change

• Problems breathing or shortness of breath

• Loss of hearing

• Blurred or loss of vision

• Swollen or bleeding gums

• Swollen lymph nodes

• Low-risk LCH involves the skin, bones, lymph nodes and brain. It can also involve multiple organs, but will generally not affect liver, bone marrow or spleen. Some children with low-risk LCH may improve without therapy. If just a single bone is affected, surgery is usually the first step. The surgery is used to confirm the diagnosis and could remove the dendritic cell growth. Doctors watch your child carefully afterward to check for a possible return of LCH.

• High-risk LCH involves multiple organs, including the liver, bone marrow or spleen. For children with high-risk LCH, the best treatment is chemotherapy that lasts for about a year. Chemotherapy are drugs that kill cancer. 

Fighting pediatric cancer and blood disorders

Our UW Health Kids | Carbone Cancer Care specialists offer the most advanced treatment options. Our pediatric cancer and blood disorder experts are national research leaders. We test new therapies and continue to work on therapies for pediatric cancer and blood disorders. For many children with rare or hard-to-treat conditions, clinical trials provide new options.

Search our clinical trials

Receiving care from the UW Health Kids | Carbone Cancer Center hematology, oncology and bone marrow transplant program at American Family Children’s Hospital means you have access to the knowledge and skills of many medical and support specialists for your child’s complex health diagnosis like cancer.

Your child’s team will include:

• Oncologists (cancer doctors)

• Hematologists (blood disease doctors)

• Nurse practitioners

• Child life specialists

• Pain management specialists

• Physical, occupational and speech therapists

• Radiologists and radiation technologists

• Social workers

• Surgeons

UW Health Kids | Carbone Cancer Center oncologists are dedicated to diagnosing and treating all infants, children and adolescents with cancer, including rare cancers like Langerhans cell histiocytosis.

Our pediatric oncologists are part of the UW Carbone Cancer Center which is a National Cancer Institute-designated Comprehensive Cancer Center. This designation means that the doctors taking care of your child are experts in cancer treatment, research and education.

When your child needs hospitalization, they will be admitted to American Family Children's Hospital in Madison, Wis.

Child life specialists help your child and family cope with any fears and anxieties. The American Family Children's Hospital Patient and Family Visitor Guide features information about:

• Hero beads

• Hospital school

• Positive Image Center

• Restoring Hope Transplant House (for blood and bone marrow transplant recipients)

• Spiritual care services

• Tyler's Place (sibling child care)