Recommendations for Older Patients with “Pediatric” Sarcomas and Children with “Adult” Sarcomas

Most pediatric institutions will accept patients who are initially diagnosed up to the age of 18 or 21.  However, adolescents and young adults (AYA), usually defined as ages 15 to 39, get childhood sarcomas also and are often referred to medical oncologists, doctors who treat adults.  These AYA and their families may have to decide between being treated by medical oncologists who may not be as familiar with the disease, but whose facilities are geared towards full-grown people, or by pediatric oncologists who may know more about the disease, but who will admit them to hospitals that have cartoon characters on the walls and waiting rooms with bins full of toys.  This group of people with sarcoma falls into what is often commonly called the “teen gap”, caught between these two medical specialties and not really suited to either.

Similarly, families of children and younger teens who are diagnosed with a sarcoma that is more typically found in adults may also have to choose between an adult sarcoma specialist who knows the disease but is not at an institution geared toward children, and pediatric oncologists who might not be as familiar with this type of sarcoma.

The Sarcoma Alliance believes that AYA ideally should be treated at a hospital with an AYA program and expertise in managing sarcomas. This program will include specialists who know how to bridge the gap between the pediatric and medical oncology worlds, and will have a treatment team that meets the special needs of this age group.  Unfortunately, very few of these programs currently exist, and therefore families may need to consider other facilities.  High quality care may also be found in settings restricted to pediatric or adult patients, despite some limitations.

In the absence of an AYA program, the Sarcoma Alliance recommends that treatment for the three pediatric sarcomas (Ewings, osteosarcoma, and rhabdomyosarcoma) should be done at a pediatric institution if possible, as there is evidence that adolescents treated at a pediatric institution on pediatric protocols do better, at least for Ewings sarcoma and other non-sarcoma cancers.

For children or AYA with other sarcomas, the Sarcoma Alliance recommends finding a treatment team with expertise in treating your type of cancer, preferably in your age group, regardless of whether they are at a pediatric or adult institution.  If this expertise is not found at your local hospital and you can not travel elsewhere, your doctor should be willing to consult someone who does have that expertise, even if they are at a distant institution.

Approved by Sarcoma Alliance, Board of Directors, August 2007