What Your Lymphedema Therapist Wants to Know

Phyllis Johnson Health Guide
  • I've been spending lots of time with Karen, my lymphedema therapist lately. Like the estimated 70% of breast cancer survivors treated with lymph node removal and/or radiation treatments, I have problems with the arm and trunk swelling called lymphedema.  Although stopping off to see Karen three times a week on my way home from work has been a hassle, once I am there, I enjoy the appointment.  We chat about our families and recipes while she massages my arm.  I also get to ask her questions about lymphedema and what the latest research shows.  Because I was asking so many questions, she made a photocopy for me of the abstracts of studies presented at the 9th National Lymphedema Network International Conference in Orlando, Florida in September 2010.

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    It is fascinating to get an inside look at the concerns of another profession.  It took awhile to understand lymphedema professional jargon, so here is a translation of some of the major issues that lymphedema researchers and therapists are talking about these days.

    How to define and measure lypmphedema.  If you have ever looked up information about lymphedema, you have noticed a wide variation in estimates of how many breast cancer survivors will get lymphedema.  A study by Jane Armer, Bob Stewart, and Robin Shook at the University of Missouri helped me understand more about how this variation happens.  Lymphedema specialists use different criteria for defining it, predictably resulting in different outcomes. 

    This study followed women for 30 months after breast cancer diagnosis and used four different methods to see if the study participants developed lymphedema.  They used arm circumference measurements, two different methods using a device called a parometer that uses infrared rays to measure arm volume, and patient reports of swelling and limb heaviness.  An amazing 83% of the women had lymphedema by at least one of these criterion.  However, if only one was used, the highest rate of lymphedema was 25% as measured by a 2 centimeter arm circumference change.  Eleven percent of the participants met all four criteria.

    Why might this information matter to you?  The way doctors counsel patients depends on their perception of how common a problem is.  The lymphedema "rate" in this study ranged from 11% to 83% depending on how it was measured.  This study suggests to me that doctors ought to be taking lymphedema risk more seriously than many do now.

    This study is also important because it checked women multiple times for two and a half years.  Many reports of lymphedema frequency only go to one year post surgery, creating artificially low lymphedema rates. 

    This study could also be important to you if you run into problems with your insurance company covering you for lymphedema problems.  You might want to ask to be evaluated by more than one method if your insurance company takes issue with your diagnosis.

    Understanding risk factors for lymphedema.  A study led by Margaret L. McNeely at the University of Alberta and University of British Columbia wanted to determine if exercise after surgery and during chemotherapy would affect lymphedema rates.  Of the 242 women in the study, some received usual care, some had supervised resistance exercise, and some had supervised aerobic exercise.  There was no significant difference in lymphedema occurrence among the groups, so the researchers looked at what factors did seem to make a difference.  The factors that increased lymphedema incidence were older age, more extensive axillary lymph nodes removal, lower fitness, and higher body mass index.  It is important to keep in mind that these women had not had radiation, which is another risk factor for lymphedema.

  • Why might this study matter to you?  If you have had breast surgery and fit any of these factors, you will want to be especially careful about watching for signs of lymphedema.  Also although the study did not find that exercise changed lymphedema risk, it increases fitness and helps with weight management, which were found to be risk factors in this study.

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    Factors that interfere with patients receiving treatment and complying with instruction.   Your lymphedema therapist wants to know how to get you to follow directions!  Two of the presentations at the lymphedema conference centered on how to  get us, the women at risk for lymphedema, to take care of ourselves.  Elise Radina and Mei Fu researched barriers to treatment.  Most women will not be surprised to learn that all too often women find that they are too busy taking care of others to take care of themselves.

    In interviews women reported that they did not have enough time, money, energy, or support to follow through on the daily self-care necessary to prevent and manage lymphedema.  Work barriers, such as unsupportive employers and patients' fear of embarrassment or job loss, also affected lymphedema care.

    Why might these studies matter to you?  They point out that we must take responsibility for our own health.  Yes, doctors need to be more aware of lymphedema; yes, therapy needs to be more available.  Ultimately, however, we are the ones who need to take care of our arms and follow through on lymphedema prevention.

    Best treatments for lymphedema.  Other presentations were more technical than I could understand, but they focused on how effective various treatments are and what methods are most useful for proving whether a treatment works.  There seems to be much interest in lymphedema circles in pumps for at-home use.  These studies matter because they give our therapists better tools to manage our swelling and pain.

    I have finished this round of treatment that lasted from Thanksgiving to Valentine's Day, so I won't be swinging by the rehab clinic on my way home from work three days a week anymore.  I'm hopeful that I can keep my arm under control this time, so while I'll miss chatting with Karen, I'll have my late afternoons back to myself.



Published On: February 26, 2011