NY Times article today

Barbara, thank you -- that's actually a good article and balanced in its presentation. I'm glad to hear Dr. Chen is conducting a double-blind study (although the thought of a "dummy surgery" is pretty alarming, yes?) Those are brave (or desperate, or both) women who are volunteering for this study. I'll really be looking forward to the results.
Binney

Saleboat, thanks for that. That's what I was hoping!

Whew!
Binney

MOTC, even in this article there's mention of the fact that the surgery is not recommended for anyone unless CLD has failed to help. But in actuality it's not clear in every case whether competent CLD has been tried (how many of us have had to try several therapists before we got one who knew what she was doing?) or what period of time has to pass before "failure" can be declared. For that matter, what level of compliance has to be evident?

Altogether a prickly subject. Hmmmm.
Binney

Binney, I don't know if these questions can ever be answered completely and perhaps there are women in the study who could benefit from current treatments but I still think its a good study and that the woman -- we can assume the vast majority have intractable LE -- are knowingly taking the risk.  I would never participate in such a study because my LE is mild, but I encourage whatever progress can be made, knowing that it involves risks.

But hopefully some answers eventually! I'm really glad there's a study going forward.

Does anyone know how long these patients will be followed?
Binney

thanks for posting this. I asked a nurse about what you've heard, cookiegall, that doing a DIEP would help by itself. She said that they sometimes find clearing away the scar tissue helps, but that's usually not part of the DIEP, the doctor has to purposefully set out to do it while they're doing the DIEP.

Kriserts, currently the big downside is the lack of research. Nobody knows what the rate of leg LE is following this intervention, and they certainly don't know what the long-term effects are, some of which will undoubtedly be a surprise. There IS recent research (Dr. A. Stanton, UK) that those of us who develop arm LE after bc treatment do so because we have a lower-functioning lymph system overall. In other words, we may be more susceptible to LE anywhere in our bodies, based on an inherently inefficient lymph system, putting us at higher risk for new LE when any trauma to the system takes place.

Lymphedema can develop at any time after the initial insult to the lymph system, as we all know, even years later. So only a long-term study will show the overall effects of this surgery, and that long term study doesn't exist at this time. So, while we all applaud those people who bravely participate in experiments that may one day help us all, you do need to know how experimental this is. The lymph science to support the safety of this surgery isn't even in place yet -- we simply don't understand the way the lymph system operates because it's only recently begun to be studied seriously. 

The good news is that there is a "Renaissance of lymphedema research" going on, with scientists like Dr. Stanton looking into the lymph system as a whole, trying to understand all the mechanisms involved. There's a whole new respect across medical science for the lymph system, and a new eagerness to find out more about it because it impacts the functioning of every part of our bodies.

But in the meantime, we need to be aware of the whole picture as we make our decisions. Maybe google Stanton's studies and see what you think.

Be well,
Binney

Dr. Massey has been doing this for a very short time, as she only learned the technique from Corinne Becker (of France) in the last couple of years. She is a lovely person, and she's conducting her own research on the results of her node transplant surgeries, which is a step forward. But even her initial results are not yet published (of course not -- it's been too short a period and too few surgeries). The long-term studies will not be available for many years. To my knowledge she is not claiming anything resembling a cure at this point, nor should she, based just on the anecdotal evidence currently available from those women who have already had the surgery.

Unlike other surgeons in the US currently performing this surgery, Dr. Massey has at least taken the time and effort to be trained in lymphedema therapy, and uses these skills to benefit ALL her surgical patients, not just the ones having node transplantation. It's possible that her biggest contribution to the the field of lymphedema and lymphedema prevention will be exactly that: that a doctor -- in fact a surgeon -- actually takes lymphedema seriously and is concerned with making breast surgery less of a lymphedema risk.

So for sure I appreciate her and her work to this point -- but that doesn't make the node transplant surgery any less experimental.

JMHO. Be well!
Binney

Welcome, Leaning! Glad you found us. Tough decisions, for sure! Do keep us posted as you move forward.

Just to clarify regarding the possibility of systemic inadequacy, the CAUSE of the LE for those of us who have been treated for bc is the physical trauma of surgery, rads and/or some chemos. That puts the affected quadrant (hand, arm, back and/or chest above the waist) at risk, but doesn't trigger LE elsewhere. The concern with removing nodes in the groin is that we then have another at-risk quadrant (foot, leg, abdomen and/or genitals below the waist) because of the trauma of surgery and node removal in that area. Currently there is no research to guide us in assessing our risk, as this surgery is recent in the US and has not been well studied in France, where it originated. Without long-term follow-up there's no way to know what the actual risk would be. The science just isn't there yet, but happily there's a lot of research being done now, and we'll eventually have better answers.

Gentle hugs,
Binney