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Lymphedema Knowledge is Limited

Posted 6/25/2014

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  Today's topic, lymphedema, is about as unexciting as yesterday's entry about oral/dental health. Both dull issues, however, are important and can assume enormous importance if you have troubles. Here is the bottom line about lymphedema: every woman who has had breast cancer surgery is at some risk. More close to bottom lines: Women who have had a full axillary dissection (as opposed to a sentinel node dissection) and radiation are at the highest risk; women who have had one of those experiences are at somewhat increased risk. And, finally, there is no time limit to the risk. Lymphedema can happen soon after surgery or years later.

  The Lymphedema Foundation ( has a lot of information on its website. No one knows exactly what causes a particular woman to develop lymphedema at a particular moment. One of the usual pieces of advice is to wear a compression sleeve on airplanes. There have been studies that refute this risk, but the advice is still out there. In the interest of full disclosure: I have taken a number of really long flights (as in 13-17 hours) and never wear a sleeve. So far, I don't have lymphedema, and I have had both a full axillary dissection and radiation therapy. I try not to feel smug about this, however, as it could always happen, and then I would feel like a jerk for ignoring the suggestion.

  The two standard pieces of advice that I do respect are not to carry something heavy in the straight-arm-down position (think of carrying a suitcase) and to wear gloves when I garden. Beyond that, I trust to the fates or luck or something.

  This is a very good interview with Dorothy Pierce from Rutgers about what most breast cancer patients/survivors do and do not know about this issue. Here is the start and a link to read more:

Lymphedema Knowledge Weak Among Breast Cancer Patients Interview With
Dorothy N. Pierce, DNP, MSN, RN, NP-C, CRN, OCN, CBCN

MedicalResearch: What are the main findings of the study?
Answer: The main findings from the study were:
Nineteen patients out of 24 (79%) reported lymphedema (LE) symptoms. Majority reporting symptoms received chemotherapy and were 50 years of age and older.
1. The most commonly reported symptoms were limb tenderness (n=10), swelling (n=9), firmness/tightness (n=8), numbness (n=6), heaviness (n=5), impaired movement of the shoulder (n=5), and finger (n=4).
2. Overall, the participants had low to moderate lymphedema knowledge. The mean knowledge score was 11.9 with a range from zero to 20.
3. Patients beginning radiation therapy for breast cancer often had not received any lymphedema information from health care providers prior to therapy; Lymphedema knowledge is moderate to weak.

MedicalResearch: Was any of the findings unexpected?
Answer: It was astonishing that only eight patients out of 24 patients (33%) received any information concerning lymphedema from their healthcare professional. The striking fact that caught my attention was that only one patient received lymphedema information from a nurse.


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