Is Langerhans Cell Histiocytosis a Cancer?

Recently, there has been much discussion concerning whether or not Langerhans cell histiocytosis (LCH) is considered a cancer. This discussion started when a recent change to patient information about LCH on the National Cancer Institute’s website stated, “Langerhans cell histiocytosis is a type of cancer that can damage tissue or cause lesions to form in one or more places in the body.” The matter becomes somewhat confusing in the professional version of this information where it is not so clear whether LCH is a cancer.

We reached out to the Histiocyte Society Scientific Committee, chaired by Dr. Carl Allen from Texas Children’s Hospital Clinical Care Center, Houston, TX, and asked if he would work with Committee members to answer the question, “Is Langerhans cell histiocytosis a cancer?” 

You can read the Committee's response below.

To answer the question, “Is Langerhans Cell Histiocytosis a Cancer?” we would point out that there remains no definitive answer.

Jeff Toughill
President and CEO
Histiocytosis Association

Stephan Ladisch, MD
Trustee
Histiocytosis Association

A Statement by the Histiocyte Society Scientific Committee:

The causes of LCH have been poorly understood since original descriptions of the disease over a century ago. The appearance of LCH lesions under the microscope, which commonly contain only a small number of abnormal immune cells, called “Langerhans cells,” surrounded by many normal immune cells initially led to questions about LCH as a cancer or immune disorder.

As a result of recent advances in LCH research, the abnormal LCH cells have been characterized as clonal (arising from a common parent cell). They also contain changes in genes regulating cell growth.  These facts favor the classification of LCH as a “neoplasia,” meaning a disorder caused by abnormal cell growth.

All cancers are considered neoplasias, but not all neoplasias are cancerous. In fact, the array of neoplastic disorders represents a spectrum of diseases with a wide range of clinical outcomes, and many are not considered cancers. There is not universal agreement among experts where LCH falls on this spectrum of neoplastic disorders from benign (not spreading) to malignant (cancerous and spreading).  Part of the problem is that cancer is not always defined the same way by everyone.

Nevertheless, increased understanding of the genetic pathways that contribute to LCH is providing important new insights into how to develop more effective treatments. By the classification of LCH as a “neoplastic” disease, support for research and advocacy by cancer funding agencies and cooperative clinical trial groups is now justified, since they typically support research for the spectrum of neoplastic disorders.  This continued research to further clarify the nature and causes of LCH is essential to improve the outcomes for patients.

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