EB,

I am so sorry this is happening to you and your husband. You've already been through so much over the past 10+ years. An article published yesterday? in the New York Times is referenced on this site and it talks about the inconsistencies in cancer care at various sites as well as differences in diagnosis, recommendations for treatment, etc. Perhaps it would help to get a second opinion? You have been given such a difficult diagnosis and prognosis that it might be helpful to see if another specialist agrees. Hopefully, someone on this board will have some info that will help as I can only offer support. My thoughts and prayers are with you and your husband.

Sophie