LE with only two nodes out?

Hey Annette .. my greatest fear is/was LE ... I have done so much research for prevention etc. 13 lymph nodes removed on the right and 3 on the left ... the first few months are so critical for the internal healing and then the nerve healing can take up to a year ... I agree with what Letlet has to say Plus the chemo can have a negative affect on the lymph drainage system as well. I am so annal about doing my own Lymph massage every morning and when I have my bath, plus I put Traumeel Cream on everyday, sometimes twice. I DO NOT carry grocery bags or a heavy purse or do anything weight bearing with my arms ... so far so good ... but, the healing is still taking place even though I have my full range of motion back and my arms are pretty much normal. Be super careful ... there is no revearsal on the LE from what I have read. Keep doing your homework ...

Annette,

Couldn't you ask your medical team if you could have a port-a-cath placed? Then they won't have to be fiddling with your veins each time. Maybe it's too late or it's harder with BMX, but a port sounds so much simpler.

Heidi- I'm sorry if this sounds like a rant--but I've spoken to Dr. Schmitz and emailed her, and she says she wants the facts to be very clear--but her official web site is exactly what you wrote, and it's misleading, and potentially dangerous, IMO.

-the JAMA article by Schmidtz et al showed that weight lifting by women "at risk" done in a VERY controlled manner, did not cause more lymphedema, and in the  women (94) who had >5 nodes out there was a reduction--but the number was so small, and it is just one study, that no conclusion could be drawn.

Here are the facts: from the article:

Results

A total of 134 participants completed follow-up measures at 1 year. The proportion of women who experienced incident BCRL onset was 11% (8 of 72) in the weight lifting intervention group and 17% (13 of 75) in the control group (cumulative incidence difference [CID], -6.0%; 95% confidence interval [CI], -17.2% to 5.2%; P for equivalence = .04). Among women with 5 or more lymph nodes removed, the proportion who experienced incident BCRL onset was 7% (3 of 45) in the weight lifting intervention group and 22% (11 of 49) in the control group (CID, -15.0%; 95% CI, -18.6% to -11.4%; P for equivalence = .003). Clinician-defined BCRL onset occurred in 1 woman in the weight lifting intervention group and 3 women in the control group (1.5% vs 4.4%, P for equivalence = .12).

Conclusion In breast cancer survivors at risk for lymphedema, a program of slowly progressive weight lifting compared with no exercise did not result in increased incidence of lymphedema. 

Okay, so that's impressive--but it's one study and very small numbers. On her PAL site, Schmidtz does state that women with >5 nodes had a 70% decrease of onset of lymphedema--of course that was only in the first year, and we're talking about 94 women who did a study and were closely followed--it can not be a global recommendation to lift weights if you had >5 nodes to reduce LE.

When you read the article in JAMA, the conclusion discussion is that weight lifting did not rise to the level of "superiority" but caused no harm--but these women used a very specific protocol, called the PAL protocol, lifted light weights with few reps, supervised, for two days a week along with stretches.

Here's the SABC abstract:

http://www.abstracts2view.com/sabcs10/view.php?nu=SABCS10L_9027

Balancing Risks of Deconditioning vs. Weight-Lifting for Breast Cancer Survivors.

Schmitz KH, Cheville A, Ahmed RL, Troxel A. University of Pennsylvania, Philadelphia, PA; Mayo Clinic, Rochester, MN; University of Minnesota, Minneapolis, MN

Background
Clinical guidelines for breast cancer survivors with and at-risk for lymphedema have advised against upper body exercise, preventing them from obtaining established health benefits of weight-lifting. The primary hypotheses of the Physical Activity and Lymphedema Trial were that lymphedema onset and worsening would not differ after a one-year weight-lifting intervention compared to no exercise among survivors at risk for and with breast cancer-related lymphedema.

Methods
We performed a randomized controlled trial of a twice- weekly progressive weight-lifting intervention involving 141 breast cancer survivors with stable arm lymphedema at study entry and 154 survivors at-risk for lymphedema at study entry. Treatment group participants were provided a gym membership and 13 weeks of supervised instruction; the remaining nine months were unsupervised. Control group participants were provided the intervention after study completion. The primary outcome was the change in arm swelling at one year, as measured by water volumetry of the affected and unaffected arms. Secondary outcomes included the clinician defined incidence of onset and exacerbations of lymphedema, lymphedema symptoms, and muscle strength. Participants with lymphedema were required to wear a well-fitted compression garment while weight-lifting.
Results
Among the women who entered the study with lymphedema, the proportion who experienced a 5% or greater increase in arm swelling (interlimb difference) was similar in the treatment and control groups (11 % versus 12%; cumulative incidence ratio [95% confidence interval], 1.00 (0.88 to 1.13) As compared with the control group, the women in the intervention group with lymphedema had greater improvements in self-reported lymphedema symptom severity (p=0.03), and a lower incidence of lymphedema exacerbations as assessed by a certified lymphedema specialist (14% versus 29% in the control group, p= 0.04).

Among the women who entered the study without lymphedema, more control than treatment group women experienced lymphedema onset defined by 5% increase in interlimb difference (17 versus 11%, p = 0.35). Among higher risk women (5+ lymph nodes removed), this comparison was statistically significant (22 versus 7%, p=0.04). Clinician-defined BCRL onset occurred in 1 treatment and 3 control group women (p=0.62).

Conclusions
Slowly progressive weight-lifting had no significant impact on arm swelling among breast cancer survivors with lymphedema, and resulted in a reduced incidence of lymphedema flares and improvement in symptoms. In breast cancer survivors at risk for lymphedema, a program of slowly progressive weight-lifting, compared with no intervention, did not result in increased incidence of lymphedema. In secondary analyses, women with 5+ nodes removed who did weight-lifting were less likely to experience increases in arm swelling.

Wednesday, December 8, 2010 6:00 PM

So, we all need to know the facts and limitations of the study and what it means for woman in the real world--who are not in a clinical study.

I sure wish she wouldn't declare that weight lifting decreases the incidence of lymphedema in women with >5 nodes by 70% on her PAL web site---one study, just a few women, short follow up, can't make a global recommendation.

Kira

I haven't read all the posts but I saw an LE MD last week and he said any arm that gets nodes removed is at risk. Yes the risk is less but still there. I had 4 nodes from my sentinel done on my right arm. When the did my port surgery I insisted all sticks/IV must be done through my foot. That's what they did.

Put also note that chemo will also cause you to retain fluid. I don't have LE in my right arm but the upper arm does swell. My left arm had mild LE and it blew up last night after Tuesday's chemo. Better today especially since I had LE therapy today.

Bottom line, get it checked out by an LE specialist. If it's LE and they treat it early this will be better managed for you.

Heidi--have you read the BMJ article? It was early physiotherapy for women with ALND and it consisted of typical lymphedema therapy as well as stretches--no weight lifting, and there was a subset of women who developed axillary web syndrome who overwhelmingly developed LE.

It's a free article, with the link you provided'

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2806631/

Here's the intervention:

Intervention The early physiotherapy group was treated by a physiotherapist with a physiotherapy programme including manual lymph drainage, massage of scar tissue, and progressive active and action assisted shoulder exercises. This group also received an educational strategy. The control group received the educational strategy only. 

I've spoken with Dr. Schmitz, I've read her articles and heard her lecture at the NLN conference: you can not make a global recommendation that weight lifting will reduce the onset of lymphedema by 70% when it was only observed in 45 women, observing a strict protocol--

The global recommendation is that women should be active and do it gradually, but if you read Dr. Schmitz's conclusions--she doesn't extrapolate that tiny subset finding to a global recommendation, she just says that careful, progressive weight lifting appears to be safe.

We can not state that weight lifting prevents lymphedema by 70% in all women with >5 nodes removed--the data just isn't there, and if you talk to women clincally, many of whom did Livestrong protocols, they have developed LE with weight lifting.

We can't disseminate misinformation: we can report on early promising studies, but we need to be very, very careful about the comments we state as indisputable facts.

If a woman followed your advice--without the caveats of doing this specific protocol with a certified trainer-- and developed LE, how would you feel?

Kira

Annette you wrote you are worried about what will happen at Chemo 3 on thursday, i think in your shoes i would postpone this until after you've had the chance to speak to PS and PCP and get that LE referral sorted. If you don't show up they can't do anything bad to you. What bad will result from one week delay with chemo, probably not much, compared to more damage to your arm that would be irreversible. Also as you have diabetes you gotta look after those veins, they might be needed for more urgent things than chemo! Go with your gut instinct and good luck.

Kira, I did not say everyone has to lift weights. I lifted weights only after maybe 10 months of plain arm exercises without resistance myself. My post says exactly that and what I am advocating is people ask their doctors how they can prevent lymphedema through one of these protocols, preferrably both. I provided the links so people can read for themselves what these protocols are about. The medical world does not seem to be paying attention to our needs. I did my research as I am at greater risk with 19 nodes removed and paid out of my own pocket for the preventive services I believed I needed, including manual lymph drainage, scar massage, physiotherapy, as in the Spanish study (which I did read), and 8 months after surgery a personal trainer, doing a progressive program like in the Schmitz study. I feel very lucky that I did these things and wanted to share this message with others. At the time of my surgery, these studies were not out, but there were other European studies I had read/read about, which brought me to my conclusion that massage as well as muscle conditioning/contraction was important in preventing lymphedema. And that now that these other studies are out, doctors should realize this has to be standard of care. Why do women have to wait until they get swollen if they are at risk and there are prevention strategies with studies to back them??? Please pester your doctors about this. Even if you only get the "Spanish treatment" (no weights), you are already far ahead of the game. I'm sorry if I didn't make this clear, Kira. I do understand your concerns more than you think. Jainey, you're welcome.  We need to educate our doctors about this.

In my case, I have been lifting weights daily for 2 1/2 years now. That's a longer follow-up than the Schmitz study. I started VERY gradually because my bone mets had reached the stage where I could not carry my handbag, much less grocery bags and that was even before surgery. So I feel strongly that if I could do it, most others can, too.

Heidi,

  Thanks for clarifying things.

  It upsets me that when you click on the PAL page, the official page, it states that weight lifting prevented onset of lymphedema 70% more in women with >5 nodes out--yet the numbers were so small, and the study conclusion didn't support weight lifting as effective and safe lymphedema protection.

  I was in early LE therapy and still got LE with just 3 nodes out--but the problem was perpetuated by an axillary seroma that wasn't treated and axillary web syndrome.

  I think it's great that you've carefully gained strength.

  I know that we are all different: many women with LE tried to lift weights after the first Schmitz article in the NE Journal, and many found that even with a good trainer and going slow, they couldn't tolerate it. Other women can, so the key is to be individualized in your approach.

  Deconditioning isn't good for us, but even Sherry Lebed Davis, of the Lebed method, blogged how she hired a PAL trained trainer, and her arms swelled no matter what she did when she tried weight lifting.

  So, I'm glad it's worked for you, but there are others who won't tolerate weights, and even more women who won't have access to a well trained trainer who knows the PAL protocol. 

  But being fit is a goal we should all strife for.

Kira