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I completed chemo and radiation for Stage 2 breast cancer in 1998. I did not realize that I had a weight limit for that arm. That is usually not a bit of info that would slip by me. Three years ago, I noticed that I could not see the viens in my arm. I had lymphadema. I control my swelling, but you know how it is. Message, wrapping, and daily compression sleeve. I do this now, but I really can't see myself being compliant when I am 80. That is 2 decades away for me and hopefully this will no longer be an experiment. Do you think I should follow through on this, or wait for more research? The greatest difference in my arms is only 2 or 3 cm, and only at two sites. I work on the fibrous tissue. I would hate to wait until I havetoo much fibrous tissue. I have a checkup at MDA in a couple of weeks. How do I get a consultation with someone there? I have called, but I have not received a return call yet. It has only been a few days.
I look at this as just a bump in the road. I just don't want to hit a deep pot hole.
Jo
I see that you and Cassie have already discussed (see comments above) some of the issues to consider. Since you will be at MD Anderson anyway, it certainly wouldn't hurt to ask about Dr. Chang's work there. From what I've read, the surgery seems to be mainly for people whose lymphedema is worse than yours. I was told that lymphedema is a permantently disabling condition that never gets better. However, my own experience with it is that with bandaging and massage I can get it better enough to not need my compression sleeve for a while. Then months later, something will set it off again, and I have to start the process again. So stay on top of the bandaging, etc., but don't assume that your lymphedema will only get worse. You may be more like me, and have long stretches with few problems.
I agree with Phyllis. I had serious lymphedema for about 18 months, and then gradually it got better. Now I only need the sleeve when I know I'll be working with my arm a lot, or doing some heavy exercise. It's totally controllable; I don't even think about it. So stay positive; you can deal with this! PJH
Thanks for the input. I have only left my sleeve off for a day here and there. In all, I have not worn it for only 3 or 4 days in two plus years. I will see how I fair without it. As we all know, it may work and or if not, I just need to message a little longer. I found more articles and at this point, the surgery would not benefit me. I am blessed to have such a mild case.
Jo
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Like you, Phyllis, I so wish we had a cure for this rotten condition. And I wish these enthusiastic surgeons had the answers for us. But for now this really is unproven. Doctor Chang at MD Anderson is good enough to admit that, and never claims a cure. Women opting for lymphaticovenular surgery will continue to need therapy, MLD, compression garments, and lots of self-care (not too convincing for your friend's insurance company!) There is also still a big question about the long-term effectiveness and safety of this surgery. The research thus far indicates a decreasing effectiveness over time, but it has not been studied long enough to know if that will continue to be a trend over time.
Dr. Becker in France has indeed been doing this surgery for several years, but she has never published any more than the study you cited, for which she chose the patient population to be studied. So we don't know what the success rate actually is, nor what long-term safety issues may be involved. She has now trained U.S. surgeons who are performing this surgery, but they too are uninterested in researching the results of this surgery over time. Recent research (e.g.-Stanton in the U.K.) clearly indicates that women who develop lymphedema following breast cancer may do so because their lymph system is already low-functioning, so that the trauma of breast cancer treatment overwhelms it. In that case, removing lymph nodes from the groin area to replace those in the axilla may very well create a serious risk for abdominal/genital lymphedema or lower-limb lymphedema. Not a good trade-off, but we won't know the degree of that risk without on-going research. And currently there is none planned. Worrisome! Let's hope they step up to the challenge of considering our long-term safety, and not just the short-term excitement of "new" treatment options.
Cassie, thanks for the additional information about the potential problems with these surgeries. As with any medical procedure, patients really do need to be their own advocates and ask doctors about studies, risks, and benefits of the procedures they are considering.
Cassie,
I did not see your comments before I sent in my question. I have never used "chatted" before. I think you answered all my questions or at least gave in enough direction. Your comments were just what I needed. My problem is so small. I have seen folks that have conditons that break my heart.
Thank you for your comments.
Jo
I have some guardedly encouraging news to add to my earlier comments. Dr. Marga Massey has recently joined the Center for Restorative Breast Surgery, a popular reconstruction practice in New Orleans. She has been trained by Dr. Becker in lymph node transplant. According to recent news from the Center, they will be starting a prospective, double-blind study of 100 transplant patients over several years to determine the effectiveness (and hopefully the safety) of this surgery. I don't yet know the actual proposal details, but hope it will be look at a broad range of outcome factors, including possible development of lower limb lymphedema (among many others). So hopefully within a few years we will have better information for making these sorts of decisions.
Cassie