Obtaining Quality Treatment for Children Diagnosed with Sarcomas

The Sarcoma Alliance recommendations for obtaining quality treatment for children with sarcomas are somewhat different from those for adults with sarcomas for several reasons:

• Sarcoma is relatively much more common among children and adolescents than among adults; about 15 percent of children with cancer are diagnosed with sarcomas, compared to 1 percent of adults diagnosed with cancer.
• About three-quarters of children with sarcomas have one of three types of cancer:  Ewings sarcoma, osteosarcoma (both bone cancers), or rhabdomyosarcoma (a cancer of the soft tissues), so most pediatric oncologists are familiar with these types of cancer.
• For most localized childhood sarcomas, standard treatments have relatively good success rates.
• Unlike most medical oncologists who treat adult cancers, the majority of pediatric oncologists are associated with pediatric tertiary care institutions such as children’s hospitals or specialized institutions that have multidisciplinary teams of pediatric health care providers.
• Children are not just small adults.  They need different medical, psychological, and educational care when they have cancer, and the impact on the family is very different when a child gets seriously ill than when an adult gets seriously ill.

The Pediatric Sarcoma Treatment Team

As a result of these considerations, the Sarcoma Alliance recommends that most children and adolescents under the age of 18 years with sarcomas be treated by pediatric oncologists, preferably those associated with pediatric institutions.  At these facilities, children can get the appropriate multidisciplinary treatment that most pediatric sarcomas require.  Since the standard of care for most childhood sarcomas includes combination chemotherapy for systemic disease control as well as surgery and/or radiation treatment for local tumor control, the pediatric sarcoma treatment team in most cases should include:

• Pediatric oncologists who can enroll children on the latest and best chemotherapy regimes, including clinical trials
• Surgeons who have experience operating on the small organs of children and knowledge of the guidelines for sarcoma biopsy and excision
• Radiation oncologists who know best how to administer radiation to growing children
• Radiation technicians with the skills to administer treatment to sedated toddlers or frightened youngsters and are conscientious about shielding their reproductive organs if possible
• Radiologists who understand the particular challenges of MRIs, CTs, and other imaging in children and who have the expertise to interpret pediatric imaging studies
• Pediatric oncology nurses adept at using small needles to draw blood, administer shots, and access ports and central lines
• Pediatric oncology social workers trained to help the child and family deal with the financial, emotional, and educational strains of treatment
• Child life specialists who can help the child cope with the challenges of cancer therapy during childhood

Seeking out a Pediatric Sarcoma Specialist

For any child with sarcoma, it is important that the diagnosis of sarcoma be accurate, as many sarcomas may have similar pathologic appearance but treatment may be quite different.  Therefore, a review by a pathologist experienced with sarcoma is highly recommended. 

Some pediatric oncologists are experts in the treatment of childhood sarcomas.  For many children with sarcomas, it may not be necessary to seek out these experts except in certain circumstances.  A second opinion from a sarcoma specialist may be helpful in these settings:

• The diagnosis has been difficult to establish
• There is controversy about the best treatment approach
• The sarcoma has recurred or is resistant to treatment

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

The following links provide basic information and resources about sarcoma in children and treatment.

National Cancer Institute's Childhood Cancers Home Page
[http://www.cancer.gov/cancerinformation/cancertype/childhood/]

National Cancer Institute's Childhood Rhabdomyosarcoma Page
[http://cancer.gov/cancerinfo/types/childrhabdomyosarcoma]

National Cancer Institute's Ewing's Family of Tumors Home Page
[http://cancer.gov/cancerinfo/types/ewings]

National Cancer Institute's Soft Tissue Sarcoma Home Page
[http://cancer.gov/cancerinfo/types/soft-tissue-sarcoma]

The Ewing's Sarcoma & Pediatric Cancer Support Group Resources Page
[http://www.cureourchildren.org]

National Children's Cancer Society
[http://www.children-cancer.com/]

Provides "Funletters" and Resources to Kids with Cancer
[http://www.kidscancernetwork.org/]

CureSearch
www.curesearch.org

Ped-Onc  Resource Center
http://www.acor.org/ped-onc/

Kids with Cancer
[http://www.kidswithcancer.com]

Resources for Kids with a Parent with Cancer
[http://www.kidskonnected.org/]

Candlelighters Childhood Cancer Foundation
[http://www.candlelighters.org/]

Locks of Love
[http://www.locksoflove.org/]

National Children's Cancer Society
[http://www.children-cancer.com/]

Make A Wish Foundation
[http://www.wish.org/]