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StepUp-SpeakOut.Org Newsletter
Together, we can make the difference in Lymphedema
Fall, 2009
Volume 3
We hope you all have had a safe and fun Spring and Summer. 
And I know we are all looking forward to the changing of leaves and the cool breezes coming! 
It's always refreshing to be moving into a new season -- whether it's Fall for those of us in the north or Spring for our friends in Australia and other points south.
Either way, we hope you're all moving forward confidently and looking forward to the newness of this time of year.  
We're still hard at work gathering new information, researching new products and coping ideas. 
We hope you will stop by and check on our updates!  And please send us any comments or suggestions you may have to help improve our website.


Weight Lifting in Women with Breast-Cancer-Related Lymphedema

You may have read in the popular press that a new study was recently published in the New England Journal of Medicine that shows that weight lifting can prevent or cure lymphedema. Unfortunately, there were some inaccurate reports from the press.  The study of  weight lifting performed by a carefully selected group of women with lymphedema did not show that the weight lifting cured them, or even stopped their swelling, but they did report fewer flares. The study results are in line with the National Lymphedema Network's long standing guidelines on exercise for patients with lymphedema. 
Any study in the New England Journal that evaluates lymphedema is an event for celebration, as it indicates that lymphedema is an important topic worthy of both study and reporting in a prestigious journal. However, the widespread inaccurate understanding and reporting of the study results caused consternation among patients, and has the potential to misinform the patients and healthcare providers. Careful analysis of the study is essential to understand both the clinical ramifications of the results and the limitations of generalizing the results to all women with lymphedema. 
The following is an edited excerpt of an article on weight lifting in women with lymphedema after breast cancer treatment by Lindsey Konkel of New York University's Arthur L. Carter Journalism Institute.
It's long been thought that weight lifting causes painful flare-ups of lymphedema, which can occur after breast cancer surgery. During the surgery, lymph nodes, belonging to the immune system, in the armpit area may be damaged or removed, leading to a build-up of lymph fluid in the arm that can cause painful swelling and lead to infection.  An estimated 20 to 40 percent of breast cancer survivors suffer from lymphedema, a cureless condition, after surgery. Lifting heavy objects (such as lifting weights) has generally been discouraged among women with lymphedema, due to fears that such activities may further injure the already damaged tissue. Weight lifting may not increase the risk of painful flare-ups for some women suffering from breast-cancer-related lymphedema, according to the results of a study recently published in the New England Journal of Medicine. "Our data indicate that careful, controlled weight lifting can be safe for survivors," said Rehana Ahmed, a dermatologist at the University of Minnesota Medical School, and one of the study's authors.
The study followed 141 breast-cancer survivors with stable lymphedema in one arm over the course of a year. Half the participants took part in a twice weekly, supervised strength-training program at a community fitness center, and half engaged in no weight lifting exercises. Weight lifting participants performed upper body exercises such as bench press, bicep curls, and tricep pushdowns, and lower body exercises like leg press and leg extension. Resistance was increased after two consecutive sessions at a given weight, if no lymphedema symptoms arose. Participants wore well-fitted compression sleeves throughout the exercises. The study found that women in the weight lifting group showed no significant difference in limb swelling from women in the non-lifting group. While 29 percent of women who didn't lift weights saw their lymphedema symptoms worsen at some point during the study, only 14 percent of those who lifted weights did.
"This published study has stimulated a lot of great discussion in both the medical and patient communities," says Dr. Mei Fu, an Assistant Professor at New York University. Fu, who was not involved in the study, is cautious not to over-generalize the findings of the study that all women with breast-cancer-related lymphedema could take up weight lifting with similar results. She points to the large number of eligible patients, over 3,200, from which the authors chose their small group of participants.
There were also fewer women with severe lymphedema in the weight lifting group than in the non-weight-lifting group. Participants with severe lymphedema are more likely to experience symptoms than women with mild or moderate lymphedema, regardless of whether they lifted weights or not, according to Fu.
Women who work intensively with their hands at home or on the job tend to see more exacerbations of their lymphedema, says Fu, and the participants were grouped into vague categories-professional, service or clerical, homemaker, or retired-that did not adequately differentiate between lifestyles based on limb use.   

When the study was first released in August, some media outlets touted weight lifting as a way to manage or even cure the disease. It is not a cure and should not be viewed as a way to manage or prevent lymphedema. Ahmed emphasizes the importance of wearing a well-fitted compression garment during exercise, starting slowly and lifting under the supervision of a physical trainer-preferably one who has experience working with cancer survivors to prevent injury.
"What we can infer from this study," says Fu, "is that with close supervision and a well-fitted compression garment, patients who meet similar criteria as described in the study are safe to perform weight lifting."
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Dr. Kathryn Schmitz, PhD. MDH, FACSM, has generously agreed to answer our questions regarding her recently published article, Weight Lifting in Women with Breast-Cancer-Related Lymphedema

Question 1.  From your experience and the outcomes of this study, what would you say are the parameters for safe weight lifting for breast cancer patients with lymphedema?
Answer:  Prior to starting a weight training program, breast cancer survivors with lymphedema should be evaluated by a certified lymphedema specialist and be cleared to proceed.  They should also have a well fitting compression garment prior to starting.  Their lymphedema should not be in 'flare-up' mode when they start.

Question 2. What are the implications of this study for those of us whose lymphedema is not stable over a period of several months? Does your study show that weight training increases stability for all breast cancer patients with lymphedema?

Answer:  Women with unstable lymphedema should not do weight training.  We did not evaluate stability in our study.  However, of the 3200 women who contacted us about the study, only 13 were excluded due to unstable lymphedema, and most of these were because we were at the end of our recruitment window and we could not wait for them to stabilize and enter the next 'wave' of recruitment, as we did with women who showed interest early in the recruitment window. Therefore, we think that the number of women out there with unstable lymphedema that could not EVER do weight training is very low.

Question 3. Did your study include any men with post-mastectomy lymphedema? Are there any special considerations for them in making use of the study conclusions?

Answer: No.  I cannot comment on how this would go in men, but I am not aware of any physiologic reasons that would result in different the outcomes for men than women in this situation.

Question 4. One of the problems we face as patients is protecting ourselves in medical situations from professional misinformation and harmful practices. Many of us worry that our healthcare providers will similarly misinterpret the results of this study and assume that all lymphedema risk reduction practices are without foundation. What exactly would you tell our surgeons and oncologists about the way this study should impact their advice to breast cancer patients?

Answer: Having lymph nodes removed increases your risk of bad outcomes from infection, inflammation, injury, and trauma.  That will always remain true.  Lymphedema risk reduction practices are well founded and should be followed, even among women with lymphedema who do weight training.
Question 5. Earlier studies indicate that patients with lymphedema suffer from feelings of shame, distress, and a sense of abandonment by their medical providers. In this setting, the affirmation of special one-on-one exercise programs, availability of trainers and therapists on demand, free compression garments, individualized instruction relative to their lymphedema, and follow-up phone calls is bound to have a powerful influence on their perceptions of their quality of life. How did your study take this factor into account in evaluating self-reported patient outcomes?

Answer: The women in the control group got all of the things you describe EXCEPT for the exercise.  That is why we did this in the setting of a randomized controlled trial, to compare outcomes in women with versus without the exercise program.

Question 6. It can be difficult for patients to locate well-qualified lymphedema therapists, and trainers educated in lymphedema management are even rarer. What qualifications should patients look for in physical trainers that can offer them the protection they need to prevent worsening of their lymphedema?
Answer: A personal trainer with a bachelors degree and a national fitness certification AND who is cautious about progression of intensity is going to serve survivors well.
Question 7. The study "Background" section cites weight training as a way of increasing bone density. Was this a factor measured in both groups, and how did they compare?
Answer: We have not analyzed that data yet, stay tuned!
Question 8. One of the fears many have expressed is that this study will create a climate, both in the medical field and the community at large, of regarding strength training as essential to lymphedema management. How would you answer those who tell us that?
Answer: I hope that weight training will be offered to all women with lymphedema as a way of helping them to recover as much arm function as possible and to increase the physiologic capacity of the affected arm so that those inevitable activities of daily living that require more of the arm than usual do not cause the injury, inflammation, or trauma that are associated with lymphedema flare-ups.  The question is how to broadly disseminate this program in a setting that maximizes patient safety, which, based on the tone of your questions, is obviously a large concern for survivors with lymphedema... and a large concern for me too!
Question 9. For those lymphedema patients who have required special considerations in the workplace to limit heavy lifting, this study would seem to deny their reality. How should employers understand these study findings in relation to such employment issues?

Answer: A woman who has lymphedema and who has had special considerations for lifting should continue to be given those special considerations unless her employer is able to provide the time and resources for that woman to participate in a safe and effective intervention like the PAL intervention --- and the likelihood of that happening seems pretty slim to me.  I would be distressed to learn that employers were using this study against women with lymphedema.
Question 10. Some of us will not do well with weight training, even though we may be neither non-compliant nor captive to unrealistic fears about exercise. Does your study identify those for whom weight training is not appropriate?
Answer: I agree!  Some women will NOT do well.  We can tell you anecdotally that the 2 women who did not do well with weight training showed signs of problems with their lymphedema within the first several weeks of training... so I think the answer is that women who will not do well with weight training will know right away and should stop. Another key point: women who were not regularly compliant and showed up 'some of the time' were more likely to have flare-ups .... Weight training intermittently is likely worse than no weight training.
Question 11. Does this study have any implications for patients with primary lymphedema, lipedema, or secondary lymphedema of the lower extremities?
Answer: NO!  I am writing a grant at this time to look at whether we can translate this program for secondary lymphedema in the lower body.

Kathryn H. Schmitz, PhD, MPH, FACSM
Associate Professor
University of Pennsylvania School of Medicine Center for Clinical Epidemiology and Biostatistics Abramson Cancer Center

Dr. Schmitz is the lead author of the article, Weight Lifting in Women with Breast-Cancer-Related Lymphedema, published in the New England Journal of Medicine, August 13, 2009. Dr. Schmitz has been involved in research focusing on the role of exercise training in preventing, treating and rehabilitating long term and late effects of cancer treatment among cancer survivors.
She generously agreed to answer our questions regarding her recently published article in the New England Journal of Medicine. 
Camisoles instead of bras may help prevent excess fluid buildup? 

Our group's unscientific study shows that, for some, ditching a banded bra in favor of a camisole may help prevent excess fluid build-up.
This "unscientific" investigation started several months ago when I went to see my lymphedema therapist and I was wearing a regular banded bra.  This was unusual for me, since I have both breast and bi-lateral arm lymphedema and usually wear compression camisoles during the day.  For whatever reason, I had a banded bra on that day.
As I took it off and lay down on the table for our MLD session, she was shocked at the red marks on both my shoulders from the thin bra straps and under my breasts from the banded bra.  My therapist had a fit, showing me the "red marks" and telling me how they impede lymph flow, period, and to stick with camisoles.
So, I brought this subject up in our support group, and was surprised that  many others also found that "ditching" their bras improved their lymphedema, both arm and chest/breast.
It may not work for everyone, but it certainly is something we recommend you try!
Here is a link to our Discussion and various experiences of women regarding Cami's Instead of Bras on our How to Cope page.
Swimming--if your lymphedema seems worse from swimming, it may be the fit of your swimming suit.
Common knowledge has it that swimming is the best exercise available for people with lymphedema. The theory seems to be that the gentle movements of swimming and water-play help stimulate lymph flow, and the pressure of the water helps to control swelling even without wearing compression garments. A real win-win combination!

But what if it doesn't work? Some people find that swimming has the opposite effect: it actually causes lymphedema to flare in their arms or chest. There are several reasons this may happen, but one that's usually not recognized is the fit of the swimming suit.
Swimsuits can bind at the shoulder, the underarm, or across the chest. All the reaching and stretching involved in water exercise puts extra strain on these areas and may result in restricting lymph flow and causing new fluid buildup. If you suspect this may be a happening to you, choose a suit that provides plenty of flexibility. A tankini like these from Lands' End, for instance, gives freedom of movement and a fit that's loose enough to prevent congestion.
Other points to consider when trouble-shooting lymphedema problems from swimming include:
  • If you're swimming laps, build up gradually, stopping if your arms feel tired or strained.
  • Vary lap swimming with water exercises (such as "running" in chest-deep water) that allow your arms to relax.
  • Avoid saunas and hot tubs with water greater than body temperature.
  • Once you're out of the water, dry and lotion your skin and don your compression garments promptly.
  • Use sun protection if you're swimming outdoors, stay well hydrated, and avoid infection by assuring that the water you're swimming in is clean.

See our Swimming Discussion on our How to Cope Page.



We hear the warnings constantly: the best strategy for staying well throughout the current flu season is to wash our hands frequently.

For those of us with compression garments on our hands and arms, keeping both hands and garments germ-free presents a special challenge. We can remove our gloves and wash our hands, but the garments remain contaminated from contact with surfaces like doorknobs and the arms of chairs. Here are some quick suggestions for keeping clean and well while wearing lymphedema garments:
Keep antiseptic wipes handy to clean public-access phones and keyboards before touching them.

Use a paper towel or tissue to open doors and grip stair railings.

Carry your own pen to use instead of the public pens at check-out counters and doctors' offices.

Order a dozen nylon inspection gloves and carry several with you to wear over your garments in public, changing them frequently and storing the dirty ones in a plastic bag until you can launder them.   One inexpensive source for inspection gloves is here.  And these inspection gloves can be easily dyed to match your outfits.
When using exercise equipment at a public gym - or anywhere else that your sleeves will be in contact with surfaces used by others - cover your sleeve with a length of tubular stockinette (the kind you use when wrapping your arm). Launder as necessary. (It ravels less if cut with pinking shears.)

Be sure to wash your garments daily, according to the manufacturer's instructions.
Check out other patient's suggestions regarding Gloves/gauntlets/sleeves and Hygiene on our How to Cope page.
100 Questions & Answers About Lymphedema
This new book has just been published, authored by Saskia R.J. Thiadens, RN, Paula J. Stewart, MD, CCLT-LANA and Nicole L. Stout, MPT, CT-LANA.
This book provides clear, straightforward answers to your questions about lymphedema.
To order your copy, please go to 100 Questions & Answers about Lymphedema on the NLN website.
Join and support this important breast cancer research!
Click Here


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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.
24 East Avenue
New Canaan, CT 06840