Mar 13, 2014 03:23PM - edited Mar 13, 2014 03:28PM by Linda-n3
Dr. Chang has moved from MD Anderson to U of Chicago. I had an appointment for consultation with him in Dec, but could not go because I got very ill and it turned out that was the weekend there were tornadoes throughout Illinois. In any case, I spoke with his assistant, and got a lot of questions answered. The one thing he did not know was whether Dr. Chang would consider doing the procedure for someone with residual disease in the axilla.
Since then I have been able to see a lymphologist closer to home, and she said the surgery would be contraindicated for me because of that, but otherwise she did not say anything negative about the procedure.
I watched his video, did the research, compared his methods to those being used in Italy and Japan, and I think if I did not have the tumor mass in the axilla, I would go for the procedure. The lymphologist I saw also suggested that my LE may improve if the chemo works to shrink the tumor, so that is keeping me a little hopeful. I will follow this thread to see if anyone goes for this procedure - it makes a lot of sense to me the way it is done with care to prevent worsening (that is something that the lymph node transplant approach worries me about - if you take nodes from somewhere else in the body, what is to keep you from developing LE of another limb, especially with the theory that there is also a systemic aspect of this condition).
Edited to add: we DEFINITELY need clinical trials for this, but many surgical procedures are developed through a "patient-centered" approach rather than "evidence-based" approach, such as so many of the procedures to correct birth abnormalities. Clinical trials have their place, but there is some controversy as to when and where they be less useful. (I have a whole soapbox on this topic, but won't go into it here).