Lymph Node Transplant

[Carla1234]

I am new to the forum. 25 years ago I had approximately 40 pelvic lymph nodes removed from cervical cancer. After about 4 or 5 years later, I woke up with lymphedema in my right leg only. I have been doing some research and have come agross a Marga F. Massey, MD, LLC. I have an appoint to discuss lymph node transplant. Is anyone familiar with either the procedure and/or Dr. Massey? Thank you for any information.

[Cassie]

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

[Carla1234]

Cassie, thank you so much for your reply. I have an appointment on April 15 to have a test which tracks the fluid running through my system and then, in the afternoon, a consult with the doctor. She will then tell me if I am a candidate for the surgery. I have lived with this for approximately 20 years and have just delt with it as something that's not going to get better. I have tried different methods throughout the year but it remains what it is. Now, I just wear comfortable shoes, keep my weight in check and exercise regularly. That's about it. My son, a nurse, found information about the proceedure and I thought "what the heck" I might at least have the test and consultation and then make up my mind. I will keep you posted. Again, thanks for your response and good luck to you also.

Carla

[patoco]

Wanted to share two abstracts Adam sent me that I had nto seen before on lymph node transplants:

Vascularized Lymph Node Transfer Based on the Hilar Perforators Improves the Outcome in Upper Limb Lymphedema.
http://www.ncbi.nlm.nih.gov/pubmed/2154 ... t=Abstract

Growth factor therapy and autologous lymph node transfer in lymphedema.
http://www.ncbi.nlm.nih.gov/pubmed/2128 ... t=Abstract

I have also included them now on our main page of info on this:

http://www.lymphedemapeople.com/wiki/do ... transplant

Pat