News & Press
Pediatric Melanoma: Where Do We Go From Here?
Guest blog post by Brittani Seynnaeve, MD, MS, Associate Fellowship Program Director, Pediatric Melanoma Program Director, Assistant Professor of Pediatrics, Division of Pediatric Hematology/Oncology at UPMC Children’s Hospital of Pittsburgh. Dr. Seynnaeve serves on the MRF’s Pediatric Melanoma Scientific Steering Committee and will be a featured presenter at the 2019 Pediatric Melanoma Summit.
Melanoma of the skin is the deadliest of all skin cancers and is linked to nearly 75% of skin cancer-related deaths. There are ~96,000 new cases of melanoma per year in the US, but children and adolescents make up less than 1% of all those new cases. Since melanoma occurs so much more frequently in adults, most of the scientific information that guides the medical management of melanoma comes from that of adult patients.
This is a problem.
Due to pediatric melanoma being more rare than adult melanoma, children’s care providers often are not on the lookout for it. Also, pediatric melanoma often presents ‘atypically’ compared to adult melanoma. Whereas most adult melanomas will present with the standard ABCDE melanoma criteria (a skin spot that is Asymmetric, has irregular Borders, Color variation, Diameter >6mm, or is Evolving), studies have shown that most children do not have melanomas that show all these criteria. Pediatric melanoma can be a smooth red bump on the skin, rather than a black mole. While we know that pediatric melanoma may be different than adult melanoma in this way, there are still a lot of similarities. We do know that melanoma in a child, like in an adult, is serious and not all children with melanoma will survive.
We do not know enough to predict exactly which child with melanoma will do just fine and which child will have melanoma that spreads or comes back.
This is a problem.
Standard recommendations for the management of pediatric melanoma are desperately needed. The starting place for this is to adequately study this rare disease so that we can see trends and identify features of a child’s melanoma that will predict their risk and therefore allow doctors to give them treatment to overcome those risks.
Large cohorts of organized patient data (databases) to serve as the groundwork for treatment recommendations are lacking. Databases can be retrospective, looking back on melanoma cases already diagnosed with follow-up data available, or prospective – collecting the data on new cases from the time of diagnosis through all treatments and follow up. We are diligently working to develop this necessary groundwork by working together with other large melanoma treatment centers, led by the University of Pittsburgh, to compile years of data including patient characteristics (age, gender, etc.), melanoma characteristics (stage, microscopic features, etc.), treatments given and surgeries performed, and most importantly outcomes, such as whether the patient remained disease-free or had a recurrence of their melanoma. This is a big undertaking, requiring a lot of dedication and hours of work, years to obtain the outcome data, and most importantly the generosity of patients and their families to agree to allow us to use their information in the database, in an unidentified format (no names or unique patient identifiers are used).
We cannot do this work without the patients and families, first and foremost. We also cannot do this work without enough funds to cover the many costs to create, maintain, and build a database over many years.
Our current retrospective pediatric melanoma database contains more than 275 previously diagnosed cases with ongoing data entry, to be completed in 2019. From this, we aim to thoroughly describe this population of patients and to identify prognostic factors to provide improved education to patients and families about their melanoma and to offer better treatments.
We won’t stop there.
Within this solid framework, there is a huge potential for developing a larger prospective database to be used for ongoing patient care, research, and data sharing. In pediatric oncology, we rely on databases such as these to provide the best possible care and keep up to date about our patients’ cancers. Pediatric melanoma should be no exception, we can do it.
If you are interested in learning more or supporting these efforts, please contact us. We are always excited for someone to join our fight.
Guided by the leadership and dedication of experts like Dr. Seynnaeve, the MRF is committed to leading our community ever closer to a better understanding, improved treatments and, one day, a cure for pediatric melanoma. We believe that no one should have to face melanoma, especially not so early in life. Please consider a tax-deductible gift to support this life-saving work today.