Diagnosis and Treatment
About Our Program
Polyposis syndromes require a specialized approach and understanding due to their connection to complex genetic syndromes. At NewYork-Presbyterian Morgan Stanley Children’s Hospital and NewYork-Presbyterian Komansky Children's Hospital, teams of specialists proactively screen, diagnose, and treat children with polyposis syndromes.
Your child’s care begins with genetic testing to determine their risk of polyposis syndromes. If your child is diagnosed with polyposis syndrome, our multidisciplinary pediatric care teams of pediatric gastroenterologists, genetics doctors and counselors, colorectal surgeons, and other specialists will individualize and tailor your child’s care based on their unique needs.
Our goal is to manage and monitor your child’s condition from diagnosis until adulthood so that any disease progression can be managed quickly and effectively. While there is no cure for polyposis syndromes, with active surveillance and long-term management, children with these conditions can live active, full lives.
How We Diagnose Polyposis Syndromes
The best way to diagnose polyposis syndromes is with genetic testing. At NewYork-Presbyterian, our genetics team includes genetic counselors certified by the American Board of Genetic Counseling and MD-PhD physician-researchers who are fellows of the American College of Medical Genetics.
Genetic testing for the diagnosis of a hereditary cancer syndrome such as polyposis syndromes can confirm a diagnosis, provide specific cancer risks, provide guidance regarding appropriate cancer surveillance (such as the frequency of screening tests), and allow family members who may also be at risk of having the same syndrome to undergo genetic testing.
The genetic testing process for your child begins with an appointment for pre-test counseling with a genetic counselor. The genetic test itself is done by collecting a sample of blood or saliva. The DNA in this sample is checked for all known genes associated with colon or rectal cancer.
Cancer Screening and Surveillance
Children who test positive for a polyposis syndrome typically undergo regular cancer screening and surveillance tests that may include:
- Colonoscopy: Along with being a tool for diagnosis, regular colonoscopies help to monitor polyp burden and remove polyps.
- Upper Endoscopy: The stomach and duodenum can be checked through upper endoscopy (a test similar to a colonoscopy) to monitor polyp burden.
- Imaging: Imaging studies such as magnetic resonance imaging (MRI) or ultrasound may be necessary to monitor for possible cancer development in the gastrointestinal tract or other organs.
Our Approach to Care
Holistic and Comprehensive Care
We recognize that every child with a hereditary condition such as polyposis syndrome has a unique set of symptoms, circumstances, and needs. We take a holistic approach to care that considers the entire patient, including his or her physical, emotional, and social factors. We strive to partner with patients and their parents in shared decision-making, empowering them with knowledge, support, and the most effective treatment options to achieve the best possible outcome for every child.
Multidisciplinary Team Approach to Care
At NewYork-Presbyterian, multidisciplinary teams of specialists care for children with polyposis syndromes including pediatric gastroenterologists, colorectal surgeons, geneticists, pediatric nurse practitioners, social workers, and nutritionists. They work together to formulate a care plan that meets each child’s specific needs.
Continuity of Care throughout the Lifespan of the Child
At NewYork-Presbyterian, a vital aspect of our digestive disease program is continuity of care. Children who have a lifelong need for specialized care, such as those diagnosed with polyposis syndrome, are embraced by our care teams. We understand the continuous needs of patients regardless of age and are vested in making certain that the transition from childhood to adulthood is simplified by not needing to change care teams. Our integrated care team seamlessly transitions patients from childhood through the teen years and early adulthood.
Parents As Team Members
As a parent, only you can provide important information about your child, especially how they were before becoming ill, and how they are feeling now. You can also help other team members shape your child's personalized treatment program based on your child's physical, emotional, and practical needs. Your input is critical for making final decisions regarding your child's care and our multidisciplinary team is here to work alongside you and your family to achieve the greatest possible outcomes for your child.
How We Manage Polyposis Syndromes
Polyposis syndromes cannot be cured, but they can be managed with active surveillance and, in some cases, surgery. For children that develop colon cancer or have too many polyps to monitor, surgery to remove part or all of the colon may be recommended.
Children with polyposis syndromes require lifelong monitoring by a pediatric gastroenterologist with expertise in genetic digestive conditions and endoscopy. Our goal is to manage and monitor your child’s condition from diagnosis until adulthood so that any disease progression can be managed quickly and effectively.