NCCN Publishes First-Ever U.S. Guidelines for Rare Cancers Associated with Pregnancy

In In The News by Barbara Jacoby

New NCCN Guidelines for gestational trophoblastic neoplasia created to ensure pregnant women with cancer receive life-saving treatment while preserving fertility.

The National Comprehensive Cancer Network® (NCCN®) has released new treatment guidelines for a group of rare cancers that impact women during pregnancy. Gestational trophoblastic neoplasia (GTN), also known as gestational trophoblastic disease (GTD), can occur when tumors develop in the cells that would normally form the placenta during pregnancy. It happens in approximately one out of every 1,000 pregnancies in the United States, though it is more common in many Asian and African countries. Due to the rare nature of this condition, and the small number of specialists worldwide, providers often are not aware of how to provide the best care for people with GTN.

“These guidelines are sorely needed,” explained David Mutch, MD, Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, who leads the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) Committee for GTN. “By compiling expert consensus, we can standardize the way this uncommon disease is treated. When treated properly, GTN can almost always be cured, but deviating from that standard can have severe consequences. Plus, by providing clear instructions for how best to treat GTN, we can streamline the insurance approval process for more efficient care.”

The NCCN Guidelines® for GTN details treatments for several variations of the disease. For molar pregnancy (also known as a hydatiform mole, a rare mass that can form inside the womb during early pregnancy, resulting in an abnormal fetus), surgery is the first, and often only treatment required. It is generally performed via suction dilation and curettage. Low-risk GTN is primarily treated with single-agent chemotherapy, although additional chemotherapy or surgery may be required for persistent disease. With high-risk GTN, treatment typically involves multi-agent chemotherapy, with possible radiation therapy for brain metastasis. Surgery can be used for chemotherapy-resistant disease.

Dr. Mutch was joined on the GTN Committee by John Lurain, III, MD, Robert H. Lurie Comprehensive Cancer Center of Northwestern University and R. Kevin Reynolds, MD, University of Michigan Rogel Cancer Center. The committee is a subset of the larger NCCN Guidelines Panel for Cervical, Uterine, and Vulvar Cancers, of which all three are members.

“We’re fortunate to have several recognized experts in GTN on our panel,” said Wui-Jin Koh, MD, Seattle Cancer Care Alliance, Chair of the NCCN Guidelines Panel for Cervical, Uterine, and Vulvar Cancers, and incoming Chief Medical Officer for NCCN. “These rare, potentially aggressive malignancies are highly curable. That’s why it’s so important to correctly diagnose, treat, and monitor people with GTN. When patients are appropriately managed — as described in these standardized guidelines — not only do they generally achieve excellent long-term outcomes, but fertility can also be preserved for the majority of patients.”

“If someone with a rare type of cancer doesn’t live near one of the world’s experts on that disease, it doesn’t mean their treatment path can’t be based on that expertise,” said Robert W. Carlson, MD, Chief Executive Officer, NCCN. “NCCN Guidelines provide care recommendations for 97 percent of all cancer patients, plus numerous additional recommendations covering screening, prevention, and supportive care. We have plans to add several more new guidelines in the next year, to build out our library of NCCN Harmonized Guidelines for regions with different resource levels, and to publish more translations for non-English speaking clinicians. We know that people with cancer all over the world are relying on NCCN Guidelines to make sure they get the best possible care for their cancer.”

The NCCN Guidelines for GTN bring the total number of NCCN Guidelines to 72. They are available free-of-charge online at NCCN.org or via the Virtual Library of NCCN Guidelines mobile app for smartphones and tablets. NCCN Guidelines are the most frequently-updated medical guidelines in the world, with new versions released at least once a year, and more often as needed. These evidence and expert consensus-based guidelines are downloaded millions of times a year by oncologists and other clinicians worldwide.

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About the National Comprehensive Cancer Network

The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 27 leading cancer centers devoted to patient care, research, and education, is dedicated to improving the quality, effectiveness, and efficiency of cancer care so that patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers.

The NCCN Member Institutions are: Fred & Pamela Buffett Cancer Center, Omaha, NE; Case Comprehensive Cancer Center/University Hospitals Seidman Cancer Center and Cleveland Clinic Taussig Cancer Institute, Cleveland, OH; City of Hope National Medical Center, Duarte, CA; Dana-Farber/Brigham and Women’s Cancer Center | Massachusetts General Hospital Cancer Center, Boston, MA; Duke Cancer Institute, Durham, NC; Fox Chase Cancer Center, Philadelphia, PA; Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT; Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance, Seattle, WA; The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD; Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL; Mayo Clinic Cancer Center, Phoenix/Scottsdale, AZ, Jacksonville, FL, and Rochester, MN; Memorial Sloan Kettering Cancer Center, New York, NY; Moffitt Cancer Center, Tampa, FL; The Ohio State University Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute, Columbus, OH; Roswell Park Comprehensive Cancer Center, Buffalo, NY; Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, St. Louis, MO; St. Jude Children’s Research Hospital/The University of Tennessee Health Science Center, Memphis, TN; Stanford Cancer Institute, Stanford, CA; University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, AL; UC San Diego Moores Cancer Center, La Jolla, CA; UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco, CA; University of Colorado Cancer Center, Aurora, CO; University of Michigan Rogel Cancer Center, Ann Arbor, MI; The University of Texas MD Anderson Cancer Center, Houston, TX; University of Wisconsin Carbone Cancer Center, Madison, WI; Vanderbilt-Ingram Cancer Center, Nashville, TN; and Yale Cancer Center/Smilow Cancer Hospital, New Haven, CT.