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Vol. 26 No. 2 - From Nightmare to Dream

By: Carol Doeringer, Allegan, Michigan
LSAP Graduate

My lymphedema advocacy began when I woke up from a bilateral mastectomy and a sentinel node biopsy (SNB). I looked down and saw the IV in my arm that received the SNB, despite having entered the operating room with it on the other side. The situation turned nightmarish when I had to argue to move the IV to the other arm due to post-operative precautions. With only a SNB, I was told, there’s virtually no lymphedema risk, but I continued to argue until the IV was changed. 

“Sentinel” turned out to mean five nodes, and “virtually no chance” of lymphedema was a meaningless statement of odds, as I did indeed develop lymphedema. I now understand that the risk assessment given to me was based on  an assortment of studies that go against each other. The literature shows inconsistent diagnostic criteria, measurement methods, and follow-up periods. 

I have also learned that evidence-based arguments for risk-reduction practices are scarce because it is unethical to give at-risk arms needle sticks, bug bites, or sunburns to see if lymphedema ensues. Recently an online lymphedema forum member said her breast surgeon called risk-reduction strategies “old wives’ tales.” Evidence is lacking, yes, but since there is not strong evidence for or against risk-reduction practices, why not explain the challenge of proving the efficacy of risk-reduction practices and let the patient decide what to do?

I suspect that lymphedema information comes to many nurses and doctors in abbreviated formats and that the data on lymphedema risks, early symptom presentation, and risk reduction strategies is not reaching the majority of caregivers.

A conversation with a large health insurer’s nurse-education continuing-education manager gave me an opportunity to widen that information pipeline. I learned that in this company’s case, oncology nurses’ coursework did not mention lymphedema, even though according to breastcancer.org, up to 40% of breast cancer survivors will develop the condition. After agreeing to add a lymphedema course to the curriculum, my contact searched her considerable resources for a course but found nothing substantial. My profession is developing financial training, so armed with knowledge of how to write continuing education, and with the help of many generous lymphedema experts, I wrote the course myself and donated it to the health insurer. It’s a self-study format that describes:

breast cancer-related lymphedema and its causes;

risks and the research limitations that make it difficult to quantify those risks; 

methods and challenges of diagnosing lymphedema; 

evidence-based treatment methods. 

Most importantly, the course describes a strategy of patient education, baseline measurements and symptom surveillance to facilitate timely referral to qualified lymphedema therapists for formal evaluation when needed.

I wrote that course two years ago. The company had the course certified for nurse, physician, physician assistant, physical therapist, and pharmacist education credits. To date, 190 students have taken the course. Additionally, through online networking I have responded to requests for course materials from 38 nurses, physicians’ assistants, and nurse educators, as well as lymphedema therapists looking for educational materials to use in their provider communities. I am now updating the course, again with the help of generous clinical and research experts who have pointed me to new findings to include in its content.

Several lymphedema researchers have made strong arguments for breast cancer survivorship programs to include lymphedema monitoring and education. Informal polling of nurses I meet in my own routine care tells me that knowledge of lymphedema beyond simple awareness is quite limited. Consider the impact lymphedema surveillance could have on patients if it is incorporated in nursing practice. Imagine if, during the standard weight and blood pressure check, nurses routinely asked breast cancer survivors questions about feelings of heaviness or jewelry fitting more tightly. In addition to catching early symptoms warranting further screening, nurses could start lymphedema education at that moment.

My contribution will never fill the lymphedema education need, but I’m gratified that it has been used to expand knowledge in at least a few corners of the nursing world. My dream is to find a credentialed nursing education provider who will make this or another comprehensive course available free to any nurse who wishes to learn about lymphedema. That’s a tall order—especially the free part, considering the cost of administering training. But as George Bernard Shaw said, some people “see things as they are and ask why…others dream things that never were and ask why not.”

There’s a need to better educate nurses about lymphedema. Isn’t it time to meet that need?

carol [at] lymphedemaspeaks [dot] com