StepUp-SpeakOut.Org Newsletter
Together, we can make the difference in Lymphedema
Volume 2
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We hope you all have a safe and fun Spring and Summer.
We're still hard at work gathering new information, researching new products and coping ideas, and have updated quite a few of our pages with very helpful information since our Winter Newsletter, including our pages on:
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Axillary Web Syndrome/Cording (thanks to Elisabeth Josenhans, a Physiotherapist who practices in Hamburg, Germany; Jane M. Kepics, MS, PT, CLT-LANA; and Jodi Winicour, PT, CMT, CLT-LANA.)
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Exercise (thanks to Naomi Aaronson, MA OTR/L CHT.)
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Breathing (thanks to Ellen Poage, RN, LMT, CLT-LANA.)
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We hope you will stop by and check on our updates! And send us any comments you may have.
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Seasonal Tips to Keep Yourself Safe During the Spring and Summer
Even if it's the Spring and Summer season, your lymphedema won't be taking a vacation. Keep your Spring and Summer and vacation plans happy and healthy by remembering a few seasonal precautions:
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Don't forget to make time for your MLD, exercise, daily rest and relaxation.
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Drink plenty of water -- especially in the warmer weather.
- Be lavish with the lotion, sun screen and insect repellent to keep your arm and hands safe when outdoors.
- Follow the travel guidelines of the NLN for your vacation jaunts, and arrive swell-free and comfortable.
- Check your sleeves, gloves/gauntlets well in advance before your travel for any changes in fit or condition.
- Be sure to "clear your fluids" with MLD before donning your compression garments before travel.
- Before leaving for any vacations, check the expiration dates on your on-hand antibiotics (oral and topical) and replace them as necessary.
- Wear a "lymphedema alert" bracelet.
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We have started a new "Blog Spot" which we will be updating with news from the lymphedema world, including the latest research news and other news relative to lymphedema.
We will be updating this blog several times a week, much more often than we can update our entire website.
Keep up-to-date with the latest news and products at:
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American Lymphedema Framework Project
National StakeHolders Conference
from ALFP.org
On March 16, 2009 over 70 stakeholders in the area of lymphedema met in Glenview, Illinois for the American Lymphedema Framework Project Stakeholders Conference.
Included in this group were:
- Lymphedema patients & advocates
- Lymphedema therapists
- Industry representatives
- Researchers and professors
- Medical doctors
- Nurses
The meeting was conducted using an Open Space format and the preliminary findings are posted here. In the next few weeks, the ALFP.org will capture the nearly 50 posters that were created throughout the day and analyze the preliminary proceedings more completely. Once this has been completed, a narrative summary of the events at the conference will be created, emailed to participants, and available at ALFP.org.
Thank you to those who joined us at the National Stakeholders Conference. If you were not able to attend, you can still participate in the ALFP. Please sign up for email updates in the tab to the left to stay current with ALFP activities.
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Comprehensive New Paper on Lymphedema Just Published
in CA Oncologist Journal
This paper was published in the Ca Cancer Journal for Clinicians. It is an extremely comprehensive and up-to-date primer on lymphedema with the latest statistical data regarding its occurrence rates, treatment modalities etc.
This is a paper that should be emailed, forwarded, copied and printed for all our medical professionals to add to their current library of resource material on lymphedema.
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Recent Advances in Breast Cancer-Related Lymphedema of the Arm: Lymphatic Pump Failure and Predisposing Factors, Anthony W.B. Stanton, Stephanie Modi, Russell H. Mellor, J. Rodney Levick, Peter S. Mortimer. Lymphatic Research and Biology. March 2009, 7(1): 29-45. doi:10.1089/lrb.2008.1026.
Abstract
Axillary surgery for breast cancer may be followed, months to years later, by chronic arm lymphedema. A simple 'stopcock' mechanism (reduced lymph drainage from the entire limb through surviving lymphatics) does not explain many clinical aspects, including the delayed onset and selective sparing of some regions, e.g., hand. Quantitative lymphoscintigraphy reveals that lymph drainage is slowed in the subcutis, where most of the edema lies, and in the subfascial muscle compartment, which normally has much higher lymph flows than the subcutis. Although the muscle does not swell significantly, the impaired muscle drainage correlates with the severity of arm swelling, indicating a likely key role for muscle lymphatic function. A new method, lymphatic congestion lymphoscintigraphy, showed that the edema is associated with a reduced contractility of the arm lymphatics; the weaker the active lymphatic pump, the greater the swelling. Delayed lymphatic pump failure may result from chronic raised afterload, as in hypertensive cardiac failure, and may account for the delayed onset of swelling. A further novel finding is that lymph flow is raised in both the subcutis and muscle of both arms in postsurgical breast patients who later developed breast cancer-related lymphedema (BCRL), compared with patients who did not develop BCRL. This new observation indicates a predisposition to BCRL in some women. Further evidence for predisposing abnormalities is the finding of lymphatic abnormalities in the contralateral (nonswollen) arm in women with established BCRL. Such predisposing factors could explain why some women develop BCRL after sentinel node biopsy, whereas others do not after clearance surgery. Future research must focus on prospective observations made from before surgery until BCRL develops.
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ONS Bestows "Excellence in Cancer Nursing Research" Honor to Mei R. Fu, PhD, RN, ACNS-BC
Mei R. Fu, PhD, RN, ACNS-BC, recently received one of the highest honors for cancer nursing research from the Oncology Nursing Society.
In December, 2008, the Journal of Nursing Scholarship published her ground-breaking study, "Breast Cancer-Related Lymphedema: Information, Symptoms and Risk Reduction Behaviors" co-authored with Drs. Judith Haber and Deborah Axelrod. Prior to publication, this study won the Oncology Nursing Research Award.
Its strong message is that more must be done to educate breast cancer survivors about strategies to reduce the risk of lymphedema.
This study was the first to provide initial evidence that providing education to breast cancer patients does have an effect on their practice of risk reduction behaviors and subsequently, experience fewer lymphedema related symptoms.
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StepUp-SpeakOut Attends a Breast Cancer Discussion Panel with Graduates at the New York University College of Nursing
On April 6, 2009, StepUp-SpeakOut was invited to appear with several other speakers for a breast cancer panel discussion by New York University College of Nursing.
Jane Dweck of StepUp-SpeakOut, a breast cancer and bi-lateral lymphedema survivor, spoke about the role of nurses in helping patients in risk reduction practices. Ms Dweck had one arm wrapped and the other with a compression sleeve and glove. She also brought a Reid Sleeve, Jovi-Pack sleeve, various compression vests, swell spots and other "props" to drive home to the nurses that lymphedema is real, and although it may be more difficult for them to take blood pressure or draw blood from the other arm or foot, that inconvenience is so so minor compared to a patient who has to face a lifetime of dealing with lymphedema because appropriate risk reductions were not taken. Ms. Dweck asked them to think of her standing there with all of the LE gear, think of how long it takes to get ready for bed, and how much earlier you have to get up every day to care for your lymphedema FOR THE REST OF YOUR LIFE, and please ask every patient "Do you have any arm restrictions?" before performing any procedures. Ms. Dweck distributed a hand-out to all of "WHAT WE NEED OUR DOCTORS, NURSES AND ALL OTHER HEALTHCARE PERSONNEL TO DO AND KNOW ABOUT LYMPHEDEMA."
There were questions and answers, and informal discussions after the meeting.
We thank New York University for inviting StepUp-SpeakOut to be a part of this breast cancer discussion panel.
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Our Director, Bonnie Pike, receives NLN 2009 D-Day award for making strides in lymphedema awareness.
Bonnie Pike has received the 2009 Lymphedema D-Day Award from the NLN for making strides in lymphedema awareness.
To win this award you have to be nominated by, say, a lymphedema support group or a therapist or other healthcare provider. And you know who nominated our Bonnie?
Saskia (the founder and director of the NLN) and the NLN!!!
Congrats to you Bonnie, and thank you for all that you do for us "Swell Girls." Bonnie's work with women with Radiation Induced Brachial Plexopathy and life coping skills has also been featured in this quarter's Lymph Link magazine in the "Action Corner." top of page |
StepUp-SpeakOut.Org receives HONCODE Certification
StepUp-SpeakOut.Org is proud to have received HONcode certification for complying with the HONcode standard for trustworthy medical information on the Internet.
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Air Travel from SABCS--Commentary on Compression Garments Paper
"Controversial Study on Wearing Compression Garments While Flying Coming out of SABCS, December, 2008"
A controversial study has come out of the San Antonio Breast Cancer Symposium, December, 2008. Air Travel Holds Little Lymphedema Risk for Breast Cancer Survivors.
Note that this study was published as an abstract and presented orally at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.
Also note these prior studies: Lymphedema initiated by aircraft flights. Casley-Smith JR, Casley-Smith JR. Henry Thomas Laboratory, University of Adelaide, S.A., Australia. Precipitating factors in lymphedema : Myths and realities, Author, ROCKSON S. G
Here's the press release:
http://www.medpagetoday.com/MeetingCoverage/SABCS/12142
A study was presented at the 2008 San Antonio Breast Cancer Symposium (SABCS) about the risk of lymphedema when flying. A news release about that study came out in the on-line newsletter, MedPageToday.
According to the news release, the study found that women who've had breast cancer surgery "need not worry" about developing lymphedema when flying.
But, that isn't what the researchers said in their report. The results and conclusions in their SABCS meeting abstract (Abstract #1119) are different from what the news release says. Here's a link to a page with a search engine that can be used to type in the abstract number and access the abstract of the study:
http://www.abstracts2view.com/sabcs/sessionindex.php
The study involved 75 women who had recovered from breast cancer surgery and were flying to Queensland, Australia, to participate in a dragon boat regatta. The researchers used "bioimpedance" to measure extracellular fluid in the arms of the women before and after the airplane flights.
One problem with the study is that bioimpedance was the only method the researchers used to see if the women had developed lymphedema. Some lymphedema researchers and clinicians think bioimpedance might not be sensitive enough to detect lymphedema until it reaches a severe form (Stage III). So, swelling that was less severe might not have been detected in this study.
According to the news release in MedPage Today, 5% of the women in the study did develop a "clinically significant" increase in arm fluid, as judged by bioimpedance. Five percent seems like enough of a risk to warrant taking precautions when flying. What is odd is that the researchers reported a different number in their abstract--not 5%--for the prevalence of "clinically significant" arm fluid. They said 15 of the 75 women developed a "clinically significant" increase; and 15 of 75 is 20%, not 5%. Twenty percent is considerable risk. Most women would probably think a risk of 20% was worth "worrying about," and worth taking precautions.
But not all the women in the study were at equal risk of developing lymphedema. Of the 75 women, 12 took fairly short flights to Queensland from other locations in Australia. Only one of those 12 women had a "clinically significant" accumulation of arm fluid. The other 63 women in the study flew all the way to Australia from Canada, which was a much longer flight--a "long haul" flight, according to the researchers.
Among the 63 women who took the trans-oceanic flights, 14 had a "clinically significant" increase in arm fluid. So, the women on the longer flights had a 14/63 = 22% chance of developing a "clinically significant" increase in arm fluid. That number would likely attract most women's attention and cause them concern.
According to the researchers, 8 of the 15 women who had a "clinically significant" increase in arm fluid had enough of an increase for it to be diagnostic of lymphedema (i.e., they actually developed lymphedema). All 8 of those women were on the flights from Canada. That means 8/63 = 12.7% of the women who took the trans-oceanic flights developed bona fide lymphedema in association with their flights. The news release said all but 2 of those women had been diagnosed with lymphedema previously. That statement implies that lymphedema triggered by flying is somehow less important if it is a recurrence than if it is a new case. In contrast to that statement in the news release, the number of new cases reported in the abstract was much higher. The researchers said in their abstract that 6 of the 8 women diagnosed with bona fide lymphedema in association with the flight had not had arm swelling prior to the flight--this was a new diagnosis of lymphedema for them.
Finally, the news release failed to emphasize an important point: The women in this study were traveling to Australia to participate in a dragon boat regatta. According to the researchers, 94% of the women in the study had "trained at a moderate to vigorous intensity for the regatta." We can probably assume they were in pretty good shape--their upper-body conditioning was likely much better than that of most women after breast cancer treatment. Several studies have shown that a supervised exercise program involving upper-body strength training can reduce the risk of lymphedema after breast cancer surgery. Wouldn't that mean the women in this study were at lower risk of developing lymphedema in the first place? So, why would the news release mislead their readers by generalizing the findings to all women?
The first sentence in the news release says, "Women who've had breast cancer surgery need not worry that pressure changes in an airplane cabin will bring on lymphedema, researchers found." But that's very different from what the researchers concluded in their abstract. Here's what the abstract said:
"For the majority of women who undertake moderate to vigorous upper limb exercise, airplane travel did not have a significant impact on extracellular fluid ratio."
Those two statements mean very different things. The discrepancies in representation of the results of this study are troubling, and should be clarified for the benefit of all women who have been treated for breast cancer and are facing the risk of lymphedema.
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OUR MISSION
As women and men with post-breast cancer lymphedema we have struggled to uncover the information we've needed about this condition, to find good treatment for it, and to keep it in control. With the help of our fellow lymphedema sisters and brothers we have even learned to live comfortably with it. Out of those experiences and a desire to share our discoveries with others, we have created this site in order to STEP UP and SPEAK OUT:
To provide accurate and accessible information about lymphedema, its prevention and treatment, to all women and men who have been treated for breast cancer. To raise awareness of lymphedema risk and promote risk reduction practices among all breast cancer veterans. To support those with breast cancer as they pursue prevention and treatment options for lymphedema, and to help them find the resources they need for managing both the risk and the treatment of this condition. To represent the concerns and interests of women and men with lymphedema and advocate with them in the medical and research communities, the political arena, and among the general public. To promote research into the prevention, treatment and cure of lymphedema.
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