Dermatofibrosarcoma protuberans: Hospital recommendation

Posted by sarab74 @sarab74, May 12 7:58am

My 10-year-old son was diagnosed with DFSP (Dermatofibrosarcoma Protuberans) last year. Since then, he has undergone three surgeries here in Canada, but unfortunately, none have been successful due to inconsistent treatment approaches. We are desperately looking for the right hospital or medical team with expertise in treating DFSP in children. If anyone has experience or can recommend a trusted hospital or specialist, we would be incredibly grateful for your help.

Interested in more discussions like this? Go to the Sarcoma Support Group.

Colleen Young, Connect Director | @colleenyoung | May 24 7:57pm

@sarab74, if you would like to consider a second opinion at Mayo Clinic with pediatric specialists, you can request an appointment here: http://mayocl.in/1mtmR63

If Mayo Clinic can offer treatment not available in Canada, your provincial coverage may cover expenses. Have you been to one of the major cancer centers in Canada like Princess Margaret Cancer Centre that works with pediatric specialists at SickKids?

sarab74 | @sarab74 | May 24 9:04pm

In reply to @colleenyoung "@sarab74, if you would like to consider a second opinion at Mayo Clinic with pediatric specialists,..." + (show)

Thank you for the suggestion. We haven’t been to Princess Margaret Cancer Centre directly, but we were at SickKids due to my son’s age. For his third surgery, the ENT surgeon was brought in from Princess Margaret. Unfortunately, the margins are still positive, exactly in the same location as the original tumour site.

It’s been very disappointing that they weren’t able to achieve clear margins in either of the two surgeries.