Experimental Surgery is promising

  The are a few Drs. preforming this surgery in the US, one of the being Dr. Marga Massey.  She traveled to France and has trained under Dr. Becker. Infact, I will be meeting with Dr. Massey on the 10th here in Salt Lake and have a consultation with her on the 20th for the node transfer. I really won't know if I will pursue this treatment but I need to hear the pros and cons in order to make the right decision for me. Ought to be an interesting presentation.

I heard Dr. Marga's symposuim on this yesterday. She's trying to get the word out to PTs who manage LE, as well as to prospective patients. For the right patient, this procedure can be life changing. She doesn't make any claims of "cure" as some others who are doing this procedure do. But she does believe she can improve someone's quality of life.

There's been a lot of negative discussion about VLNT in that "taking a healthy node can cause LE somewhere else." And while that's very true, it's the selection of the nodes from the donor site that's crucial. When treating axillary LE, she uses a few nodes from the lower lateral aspect of the abdomen, NOT the groin. Using groin nodes WILL cause LE of the lower extremity. But the nodes she uses are ones already being removed by the DIEP procedure, when that fat is transfered to the breast. And none of the DIEP patients have LE of the leg.

So far in her practice she has had no donor site LE development. But it's bound to happen at some point. She's fully aware of that, and fears it. She's done 83 VLNT procedures in the past 3 years. Some people are sleeve-free. But most are in less discomfort, have fewer infections, and need to wrap less, but still require some level of care, either by PT or on their own once stable.

I learned that some people who get LE from sentinal node biopsies (fewer than 3 nodes removed) or even just from a breast prophy removal with no nodes taken--these are people who have congenitally abnormal lymph channels to begin with. She likened "normal" channels as a four-lane highway. Disrupt one lane, and you can still get good flow of traffic. In the abnormal folks, it's more like a two-lane country road. A wreck on that will block traffic in all direction for a long time. And this is why some people just aren't candidates for a repair.

That news broke the heart of one young lady sitting in the audience with two sleeves. She had one node off one side, two off the other. Bang. LE. Most likely congenital abnormalities of her lymph channels, and not a good candidate for adding nodes to her axilla.

I had no idea about the complexity of LE. The pictures of some of the legs she's ended up doing are chilling. But she is apparently giving people a life back.

The hope is that the donor site of the future is a tiny group of supraclavicular nodes. Head and neck LE is not common after a node removal in that site. Time will tell. In the meantime, most of her work with VLNT is pro bono for medicare patients. The woman gives.

Her website www.drmarga.com has dates and places. If she's coming to a city near you, I really encourage going to hear what she has to say.

OH--and in the works is a standardized questionairre that should one day be the "gold standard" for pre-and post-op patients, and following people with LE. It will be called the Lymph-Q. there's a Breast-Q too, but not from Dr. Massey.

Katiejane, were you able to attend her SLC pymposium earlier this month? What did you think?

Anne,  I did attend her symposium in SLC and it certainly has caught my attention!  It was made completely clear that this is NOT a cure but is a tool for management.  Am I considering the procedure?  You bet I am!!  I encourage everyone that has the opportunity to attend one of her symposiums to do so. It is an education in itself, whether or not your choose VLNT/DIEP. Anne, let me know if you decide to go forward!  Hugs ladies!!!  Katiejane

Anne,  I fell in love w/ Dr. Massey-especially after my 1 on 1 consultation.  She seems to think I would have better results with my LE if I do a DIEP and the nodes that are moved with my tissue. Also, this reduces the risk of donor site LE. Are you happy with your flap results? Did you do yours at NOLA? Thanks, Katiejane

ps-did your insurance cover some of this?

Also, does anyone know if the docotrs at NOLA do the procedure in a similar manner or do they use the groin as well?  Does anyone know their stats on how many procedures done/successful?

I think that anyone with questions about the procedure could email Dr. Marga via her web page contact link and she will get back to you.

Anne,  I'm floored as well that people would send Dr. Massey "hate mail"???  Really???  If people are against the procedure, then stay away-they need to get a life!  Not everything works for everybody and they need to focus on something productive that might work for them.

She will answer any and all questions-she is an awesome lady!

katiejane

I would have this procedure in a heart-beat.  To have the chance of not having to wear this ugly as hell sleeve and glove, I would take it.  To feel more normal, to not go out and be asked about it constantly and hence reminded constantly about my breast cancer ordeal....

Hello Ladies,

 Here is a link where you can read the article:  "Conversation with Dr Chen - Lymph node transfer - First US clinical trial"

http://www.ascopost.com/articles/september-1-2011/a-conversation-with-constance-m-chen,-md,-mph.aspx

Take care

nati2610 - I think if you were really interested in it, you could email Dr. Massey. She usually answers it herself, and I am sure that she has some patients that would be happy to talk to you. Just go to her website to find her email. Good luck!