Giant Nevus - Pediatric Dermatologist

So our first step in following doctor recommendation was to visit a pediatric dermatologist. Recommendations ranged from Chicago to St Louis. The reason was that a specialist with regular experience with giant nevi would have insights that others may not.   So we took the direction of visiting Dr. Bayliss at St. Louis Childrens Hospital.

St. Louis Childrens Hospital

Scheduling time with the doctor required a recommendation from Connor's primary care physician and then we had to check with health insurance to make sure the visit would be covered.  Out of network... of course.
The visit day came and we drove 3 hours to St. Louis for a visit that confirmed - yes, this is a giant nevus, no it does not appear to be "high risk" because the surface texture is uniform and there is no irregular or concerning features, but yes there is an elevated risk of cancer later in life.  What that risk is ranges from 6%-15% based on the literature, but the data is inconsistent because very few giant nevi are alike.  This implies a sample size too small to establish a statistically significant or accurate % rate.  The doctor took some pictures and told us to keep an eye out for any changes in shape, edge texture, or any other change at all because that could be an indicator of irregular cell growth.

So what are our options? We asked the doctor.  You can have it removed or leave it and take the risk of needing to remove it later in life due to irregular cell growth.  So we talked briefly about getting a recommendation to see a plastic surgeon at SLCH to see what that involved.  So we were back to St. Louis four weeks later.