what is your PT like

Mine basically gives me a massage to get the lymph fluid to move properly and get it out of my arm. She works on me for about 45 minutes. She did also give me some exercises to do, and gives me tips on how to manage, answers questions etc. So far, she has not taught me what to do for myself, but I guess you can't have everything. PT is not a big thing yet in Greece, and this lady is considered the best for managing LE.

Kam,

  Please tell the physician's nurse to read the literature: this is from stepupspeakout, and the International Best Practices Guide for Lymphedema lists AWS as a risk factor for LE

http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

In this study, all patients got prospective LE therapy, and it helped reduce LE--except for the women who had significant AWS early post-op:---

Axillary Web Syndrome is a risk factor for lymphedema: In a study of early PT to minimize lymphedema, a subset of patients who developed axillary web syndrome at 3-4 weeks post-op had an almost universal development of lymphedema, despite intervention http://www.ncbi.nlm.nih.gov/pubmed/20068255

BMJ. 2010; 340: b5396. Published online 2010 January 12. "We also found that 12 of the 18 women who developed secondary lymphoedema had axillary web syndrome during the second and third week after surgery. The axillary web syndrome is a known but poorly studied complication of surgery. No study has shown any link between the axillary web syndrome and the onset of secondary lymphoedema. We and others suggest that the axillary web syndrome may be a sign of injury to the lymphatic system and it could produce a lymphatic overload as a result of failure of the lymphatic system. This overload, together with other factors, could be responsible for the onset of secondary lymphoedema"

Learn about axillary web syndrome: http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

No idea where this nurse got the 1% risk factor for LE after SNB, since there is no "gold standard" definition of LE, incidence varies by how you define it, but with SNB the quoted risk is 5-10% with added risk if radiation is performed.

Many women get cording, and not all of them get LE, but while the cording is actively present, the lymphatic system is not functioning well, and can be overwhelmed and LE can result.

In the link I put in above, there are active links to the abstract and AWS page on SUSO. There's lots of misinformation out there amongst health care providers about LE, because they're not taught about it, and would like to believe that SNB has eradicated it. 

I'm living proof that it hasn't. And I got mine in the setting of extensive cording.

Kira

Kam, the only studies about sleeve use without obvious LE, are the Nicole Stout studies where she uses a perometer (highly sensitive laser measurement) and if women increased by 3% from their baseline (she considers that latent, stage zero LE), she had them wear a sleeve/gauntlet and followed them--and most did not progress. 

Compression doesn't make cords go away any faster--that I know of--and the expert on cording who I usually ask my questions to--Jodi Winicour PT at Klose--is very leery of poorly fitting compression causing problems, and there really isn't a role for it if you don't have LE.

Early AWS is painful, and then the acute phase eases and sometimes all the cords go away, and sometimes one or two linger for a long time.

The treatment is gentle stretching, manipulation of the cords by the PT and anti-inflammatories.

Because you're at risk for LE--and it seems especially high during the acute phase--go easy on the arm--avoid straining it.

Recently there has been interest in oncology rehab, and more PT's understand cording, but they also have to understand that you need to avoid repetitive arm movements that might strain the muscles, but still stretch and progress with exercise gradually.

Hope she consults with or sends you for an LE eval--and hopefully the LE PT is comfortable treating cords--talk to her/him before you make the trip.

The good news about cording is that it does get better. You just need to be cautious while going through this.

Kira

Carol, here's the abstract (easy to get the article if needed)

http://www.ncbi.nlm.nih.gov/pubmed/18428212

Cancer. 2008 Jun 15;112(12):2809-19.
Preoperative assessment enables the early diagnosis and successful treatment of lymphedema.
Stout Gergich NL, Pfalzer LA, McGarvey C, Springer B, Gerber LH, Soballe P.
Source

Breast Cancer Department, National Naval Medical Center, Bethesda, Maryland 20889-5600, USA. nicole.stout@med.navy.mil
Abstract
BACKGROUND:

The incidence of breast cancer (BC)-related lymphedema (LE) ranges from 7% to 47%. Successful management of LE relies on early diagnosis using sensitive measurement techniques. In the current study, the authors demonstrated the effectiveness of a surveillance program that included preoperative limb volume measurement and interval postoperative follow-up to detect and treat subclinical LE.
METHODS:

LE was identified in 43 of 196 women who participated in a prospective BC morbidity trial. Limb volume was measured preoperatively and at 3-month intervals after surgery. If an increase>3% in upper limb (UL) volume developed compared with the preoperative volume, then a diagnosis of LE was made, and a compression garment intervention was prescribed for 4 weeks. Upon reduction of LE, garment wear was continued only during strenuous activity, with symptoms of heaviness, or with visible swelling. Women returned to the 3-month interval surveillance pathway. Statistical analysis was a repeated-measures analysis of variance by time and limb (PRESULTS:

The time to onset of LE averaged 6.9 months postoperatively. The mean (+/-standard deviation) affected limb volume increase was 83 mL (+/-119 mL; 6.5%+/-9.9%) at LE onset (P=.005) compared with baseline. After the intervention, a statistically significant mean 48 mL (+/-103 mL; 4.1%+/-8.8%) volume decrease was realized (P<.0001). The mean duration of the intervention was 4.4 weeks (+/-2.9 weeks). Volume reduction was maintained at an average follow-up of 4.8 months (+/-4.1 months) after the intervention.
CONCLUSIONS:

A short trial of compression garments effectively treated subclinical LE.

Copyright (c) 2008 American Cancer Society.

Nicole Stout has been publishing a lot of good work--hard to reconcile that with her APTA stance that all PT"s can treat LE:

http://www.ncbi.nlm.nih.gov/pubmed/21974905P

M R. 2011 Dec;3(12):1098-105. Epub 2011 Oct 5.
Segmental limb volume change as a predictor of the onset of lymphedema in women with early breast cancer.
Stout NL, Pfalzer LA, Levy E, McGarvey C, Springer B, Gerber LH, Soballe P.
Source

National Naval Medical Center, 8901 Wisconsin Avenue, Breast Care Center Bldg. 19, 3rd floor, Bethesda, MD 20889-5600(†).
Abstract
OBJECTIVE:

To demonstrate that segmental changes along the upper extremity occur before the onset of breast cancer-related lymphedema (BCRL). These changes may be subclinical in nature and may be predictive of the onset of chronic lymphedema.
DESIGN:

A retrospective subset analysis of a larger prospective cohort trial. PATIENT COHORT: A total of 196 patients provided consent and were enrolled in the prospective study. Subclinical lymphedema developed in 46 of these patients. Limb volume data were available for 45 of these 46 patients from visits before the onset of lymphedema and were used in this analysis. We compared this group with an age-matched control group without BCRL from the same cohort (n = 45).
SETTING:

Military hospital outpatient breast care center.
METHODS:

Women were enrolled and assessed preoperatively. Baseline measures of limb volume were obtained with the use of optoelectronic perometry, and reassessment was conducted at 1, 3, 6, 9, and 12 months postoperatively. BCRL was identified in 46 of 196 women at an average of 6.9 months postoperatively. A retrospective analysis was conducted in which we examined volume changes over four 10-cm segments of the limb at the visits before the onset of BCRL. By using repeated-measures multivariate analysis of variance, we compared segmental volumes between groups at preoperative baseline, time of diagnosis of BCRL, and time of follow-up after early intervention. Linear regression analysis was performed to determine the strength of the relationship between total limb volume change with segmental volumes at the time of diagnosis of BCRL.
MAIN OUTCOME MEASUREMENTS:

We hypothesized that segmental volume changes occur and can be measured in the limb before the onset of lymphedema.
RESULTS:

At arm segments 10-20 cm (P = .044) and 20-30 cm (P <.001), a significant volume increase was noted before the diagnosis of subclinical BCRL. Segmental volume changes correlated to the total limb volume (TLV) change. At segments 20-30 cm, the coefficient of determination was r(2) = 0.952, and at 10-20 cm it was r(2) = 0.845, suggesting that these segments predicted TLV changes.
CONCLUSION:

Serial interval assessment of limb volume segments may be an important clinical tool to detect early-onset lymphedema before TLV changes.

Copyright © 2011 American Academy of Physical Medicine and Rehabilitation. Published by Elsevier Inc. All rights reserved.

PMID:
21974905
[PubMed - in process]

And, Electra Paskett on incidence of LE in younger women:

http://www.ncbi.nlm.nih.gov/pubmed/17416770Cancer Epidemiol Biomarkers Prev. 2007 Apr;16(4):775-82.
The epidemiology of arm and hand swelling in premenopausal breast cancer survivors.
Paskett ED, Naughton MJ, McCoy TP, Case LD, Abbott JM.
Source

Ohio State University Comprehensive Cancer Center, A356 Starling-Loving Hall, 320 West 10th Avenue, Columbus, OH 43210, USA. Electra.Paskett@osumc.edu
Abstract
BACKGROUND:

Breast cancer survivors suffer from lymphedema of the arm and/or hand. Accurate estimates of the incidence and prevalence of lymphedema are lacking, as are the effects of this condition on overall quality of life.
METHODS:

Six hundred twenty-two breast cancer survivors (age, RESULTS:

Of those contacted and eligible for the study, 93% agreed to participate. Fifty-four percent reported arm or hand swelling by 36 months after surgery, with 32% reporting persistent swelling. Swelling was reported to occur in the upper arm (43%), the hand only (34%), and both arm and hand (22%). Factors associated with an increased risk of developing swelling included having a greater number of lymph nodes removed [hazards ratio (HR), 1.02; P < 0.01], receiving chemotherapy (HR, 1.76; P = 0.02), being obese (HR, 1.51 versus normal weight; P = 0.01), and being married (HR, 1.36; P = 0.05). Factors associated with persistent swelling were having more lymph nodes removed (odds ratio, 1.03; P = 0.01) and being obese (odds ratio, 2.24 versus normal weight; P < 0.01). Women reporting swelling had significantly lower quality of life as measured by the functional assessment of cancer therapy-breast total score and the SF-12 physical and mental health subscales (P < 0.01 for each).
CONCLUSIONS:

Lymphedema occurs among a substantial proportion of young breast cancer survivors. Weight management may be a potential intervention for those at greatest risk of lymphedema to maintain optimal health-related quality of life among survivors.

Fran, the classic medical literature says 90 days to resolve cords, but many PT's see them linger longer--I have a couple of buried old cords that show up if I over do it.

Check out these youtube videos

Breastcancersisters: AWS

http://www.youtube.com/watch?v=DhseruhnMUc

Breastcancersisters AWS stretches

http://www.youtube.com/watch?v=QoP9zQ05Qp0

Kira

Here's a question for those of you with cord experiences: Did you notice any pain in the axilla prior to seeing/feeling the actual cord?  I'm having mild but noticeable pain in that area, which is new. My LE so far has been confined to underside of upper arm and side of trunk just under the axilla. If the nagging but mild pain is a precursor, is there anything proactive --such as the skin lifting that Kira describes --that can help prevent a cord from forming?  (Or am I simply getting paranoid....)

Carol