Topic: Who gets Lymphedema?

Hi, s-mom,

Brava to you for thinking about this and taking steps to protect yourself! There are lots of things you can do to reduce your risk. Some are about avoiding things, and others are about taking positive steps to promote lymph flow. Here are two websites with information:

www.lymphnet.org  (look for their Position Papers on Risk Reduction, Air Travel, and Exercise)

http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

 It's also a good idea to request a referral to a well-trained lymphedma therapist for baseline arm measurements for future reference and personalized tips for managing your risk.

Hoping you never have to join our "swell" sorority!
Binney

I think the emphasis of what she said was "with any luck"! In other words, you are certainly still at risk for lymphedema, but fewer nodes does decrease the risk, so you can hope you'll be on the right side of those risk statistics. There are a lot of factors that influence risk -- for instance, overweight (especially weight gained after surgery), infection, seroma, or cording following surgery, previous surgeries or traumas to the area, diabetes or prior vascular problems. But no one can tell for sure yet what all the risk factors are, or who will develop lymphedema following bc treatment and who won't.

"With any luck" it won't be you!

Be well,
Binney

Sadly, I think you need luck, too.

I already had in one arm due to bc, so took every precaution known to try to prevent it in the other, with no success. 

However, I do think that looking after it, and being very aware, from Day 1, has helped to keep it manageable.  And, as has already been mentioned, there is a lot we can do to minimise the risk.

I think I'm right in saying that the risk of developing LE is always there, so you need to remain vigilant.

Hope you are one of the 'lucky' ones.

It is affirmatively good to weight train as long as you follow the guidelines laid out by Binney.  If you allow your arm to weaken you open yourself up to injury, which could invite LE.  

Hmmm, that may be difficult, as doctors who specialize in LE are mighy scarce, and they generally deal primarily with patients whose LE is a puzzle -- with us bc veterans there's not a lot of mystery about it when we develop LE.

What you actually need is a referral from any doctor on your team to a well-trained lymphedema therapist, since they're the people who evaluate and treat it. Here's a web page to help you find one near you:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Let us know what you discover! Be well,
Binney

Hi, s-mom,

A lymphedema alert bracelet is a great idea, and a lot of us have them. I have an alert necklace instead that I got from the ACS on-line catalog, because I'm bilateral and don't want to wear two bracelets. You'll find some other arm-protecting suggestions are here:

http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm#bracelets%20alerts

The neon-pink ones (available free as noted on that page) and the "g-sleeve" style are good for hospitalizations and medical tests, the others for everyday wear. Let us know what you discover!
Binney

Hello, flowerpetal, and welcome!

So many of us have had this same problem with our doctors that we developed a web page, based on the experiences of women here, that is especially for doctors and nurses and other medical caregivers. You can click for a printable version to take to your doctor. It has embedded links to study abstracts to support points like the one you're trying to make. It's here:

http://www.stepup-speakout.org/what_we_need_healthcare_providers_to_know_about_lymphedema.htm

Hope that helps, and that you never have to join our "swell" sorority!

Be well,
Binney

I am new to this and am trying to find out as much information as possible on LE.  I was also under the impression that if only a few nodes were removed, then there wouldn't be a problem, but I have found out differently. 

I just had my lumpectomy last Friday and he removed 3 nodes.  I just want to take all the precautions that I can so that I will never have to worry about LE.  I have ordered a medical bracelet already and it will be here soon.

I haven't talked to my doctor about an LE Therapist, but I will next week when I have my next appointment.

Thanks for all the great information, it will really be a help.

Juannelle

OK, actually no one has mentioned LE to me since my dx.  What other things should I be aware of, besides LE.  You think once you have had the lumpectomy and all that someone would tell you of some of the other things that could happen to you down the road.  I will see my rad onc on 9-3 and I understand that radiation could cause LE.

How do you ever learn what you don't know?  My guess would be you learn it the "hard way".

Juannelle

Binney,

Thanks for the information.  I have already been out to the website and have read your article.  I found it very informative.  Thank you and everyone who participated for all the information.

I just want to stay one step ahead of anything that could come my way.  I know I am not traveling this road alone.  I am willing to learn from everyone else's experience.  I have been out buying camisoles and may never wear another bra, bought a med bracelet, rubber gloves, creams, crystal deodorant, electric razor and if there is anything else I will need I will be getting it to.  I really do not want LE.

Thanks again for all the good info.

Juannelle 

flowerpetal--anyone who has had nodes removed is at risk for lymphedema. I think radiation may raise your risk somewhat as well. My mom had both (radiation and axillary lymph node dissection years ago--before SNB) and developed LE 6 years  later.

anne

Binney- No, I don't have kaiser insurance, something of an equivelent-insurance for the indigent. I lost my State job, which didn't offer me insurance anyway. I get services through the County and let me tell you, it is the bottom of the barrel for the doctors they refer you to.

Can anyone tell me if it is the 'Standard' that if one node is positive the doctor takes all nodes?

Hi, Lisa,

I'd guess you just heard this information based on a new study just published in the New England Journal of Medicine. It was picked up by the media and widely publicized, but unfortunately seriously distorted. This arm of the study looked at women who already had lymphedema, and who had no flares or infections in the three months prior to the study start. The women were divided into a study group and a control group. The study group got expertly-fitted compression garments to wear while exercising. They were then instructed by specially lymphedema-educated trainers who were in turn supervised by well-qualified lymphedema therapists, and they began a program of VERY SLOW progression in weight training, of course backing off when there was any sign of increased problem with their lymphedema (achiness, tingling, new swelling).

The study showed that they did not have any more problems with flares of lymphedema than the control group did -- in fact, slightly less, but not significantly so. They did gain more strength than the control group, of course, and that's the good news.

In other words, the study had nothing to say about prevention of lymphedema, though it's been widely misinterpreted that way. It's major finding is that very carefully progressive weight training, using special weight trainers and well-trained lymphedema therapists and wearing expertly-fitted garments, will not cause any more lymphedema problems for selected women with lymphedema than women who don't do specific exercise with their arms. For those who believed that they should baby their arm after treatment, that's the good news.

But here's the bad news: when we instead get the message (from the media, mainly) that there is "no harm" in these things, the temptation is to go for it without concern. In that case the result is going to be a whole lot of new members for our Sorority of Swell.

So the truth seems to lie somewhere between "avoid it" and "go for it." See a good therapist for baseline arm measurements, risk reduction tips, and fitting for garments to use prophylactically. Stay well hydrated. Progress very slowly, paying careful attention to your arm for any sign of problems (even just "feeling funny"). Stop if you experience this -- rest and elevate your arm.

Be well!
Binney

Hi

I just had a sentinel node removal (4) in April... I dont have full blown lympedema  but I do have measurable fullness to the arm.  I got a sleeve that fits great.. and right know on my thrid gauntle.. just can get it fo fit properly around the thumb and webbing between forfinger and thumb. causes pain, reddness. irritation,, so at the moment I only wear the two when I work or leave the house. I dont want to take any chances with this thing!