Hi--I'm new to this forum, so not sure if this is the best way to post this question. In any case, thank you for the words of support I've received!
I'm interested in getting some input on researching a treatment decision for my son, Ian. We are contemplating full lung radiation, which is a treatment option that is not generally considered the standard of care for someone his age (he's 4-1/2) or something that's been proven effective in studies (mostly due to the general lack of significant data). It is, however, being recommended because of the fact that he showed some possible signs of spread to his lungs in his early scans (which have since disappeared) and because he had a very large tumor (>5 cm) that responded only fairly well to chemo (Doxorubicin/ifosfamide)
We're getting inputs from multiple sources, including his primary oncology/radiation oncology team at Sloan Kettering, our local hospital, St. Judes and are going to meet with Dana Farber in January.
I suppose there are two more specific questions:
- Any guidance on the best way to get second opinions from institutions without going through a formal transfer of care? It's not practical for us to send his slides to several institutions or visit several in the near term, nor is it clear it would be of benefit?
- Any experience with full lung radiation treatment or consideration of treatment?
Thanks to all for your thoughts.