by Cassie » Mon Mar 14, 2011 6:00 pm
Hi, Carla,
I have bilateral upper body lymphedema from breast cancer treatment and am active in the breast cancer community, so I'm familiar with Dr. Massey and the lymph node transfer process. Dr Massey studied with Dr. Corinne Becker from France, who is the pioneer for this type of surgery. Unfortunately Dr.Becker has not cared to do adequate studies of her patients either long term or even short term (the studies she has published involve patients she selected herself, and have not been followed long-term). So there's no real understanding of the potential for harm from this procedure. The most obvious problem, of course, is that if you take lymph nodes from another area of the body, that sets up the possibility that lymphedema may develop sometime later in the new area. Not necessarily a good trade-off. Other possible complications and long-term problems are simply unknown, because at present there are no adequate studies. Dr. Stanley Rockson, a specialist in lymphedema and lymphedema research at Stanford, along with many others in the field, feels there is not enough understanding about the lymph system in general to suggest that this procedure is safe in the long term. In his words, "The science just isn't there yet."
That said, Dr. Massey herself is a respected breast reconstruction surgeon, and she's gone to some effort to educate herself about lymphedema, even to completing training as a lymphedema therapist. She is conducting her own research using the women who agree to node transplant surgery as part of their reconstruction (or even separately from it) and has an interest in experimenting with node transplants for lower extremity lymphedema as well. The operative word there is "experimenting," because the surgery itself is still experimental. She is a charismatic person, and she's a careful surgeon, and I'm truly glad she's wanting to do some research of her own. The women I've talked to who have had it done for their arm lymphedema express guarded satisfaction with more ease of management, but they are not "cured" in the sense that they don't have to deal with it anymore.
So, it's early yet to say anything with any certainty, either way. Dr. Massey herself has been up-front about these risks and I don't have the feeling she's trying to recruit patients on false premises (as some earlier surgeons did). We'll be interested to hear how your appointment goes and what you decide to do, so please keep us posted!
Cassie