Welcome to Connect @charlenekeogh. You found the right discussion group with members who also CTCL such as @shari715, @dws1968 and newer members @penn1023, @innocentlee, who are in a similar period of waiting for a diagnosis and possible treatment options. Maybe @shari715 will be able to talk to you more about light therapy.

It’s frustrating that it took so long for a correct diagnosis for your son but it seems to be a common trait. I found a good article about CTCL from the Cutaneous Lymphoma Foundation that might provide you with some useful information.

Cutaneous Lymphoma Foundation
https://www.clfoundation.org/
Hopefully your son’s meeting with the two specialists in November will get him on a path to treatment. Will you please let us know what he finds out?