There are many gray areas in Breast Cancer Word, but surely lymphedema is one of the big ones. There are no definite numbers re incidence, rather vague information about risk, and surely no terrific treatment options. One surprise for many women is learning that the risk is life long. The usual assumption is along the lines of : "If I am fine for three years after surgery, it will never be a problem." Wrong. As far as I know, the risk does not decrese or increase with time; it is just there. The usual statment is that women who have had a full axillary dissection and radiation therapy are most at risk, but one one is entirely exempt. The largest risk pool includes most women who had a positive sentinel node, resulting in a second surgery, as well as all of us who had breast surgery before the mid to late 90s. This includes me as the standard surgery at that time was the full dissection.
So, how do we protect ourselves or at least minimize the risk? Depends on whom you ask. If you look at the excellent website of the National Lymphedema Network (http://www.lymphnet.org) there is a great deal of information. If you ask your surgeon or other caregiver, you likely will be given a watered down version of what to do or not do. Another situation when we all have to make our own decisions, balancing risk vs living life. Personally (and this is not a recommendation), I pay attention to two things: wearing gloves when gardening and not carrying something heavy in the carrying-a-suitcase-arm-straight-down position for long. There is a lot of controversy about the wisdom of wearing a compression sleeve on airplanes. The official recommendation is to do so, although there have been a few studies that negated that risk. Personally, and again this is not a recommendation, I don't. I have taken many vry long (up to 18 hour) flights since the surgery and have not yet had a problem. If I get off an airplane someday with a swollen arm, I will feel like an idiot.
This is a study from Breast Cancer Research and Treatment about lymphedema education, what women are routinely told by their doctors. I have known one fine surgeon who insisted that none of his patients ever developed this problem; he apparently experienced it as a possible negative outcome directly related to this skills. Since I personally know several of his patients who do have lymphedema, I have been confident that incidence is unrelated to surgical technique.
Here is the abstract:
Patient awareness and knowledge of breast cancer-related lymphedema in a large, integrated health care delivery system
Marilyn L. Kwan • Ling Shen • Julie R. Munneke • Emily K. Tam • Paula N. Partee • Mary Andre ´ • Susan E. Kutner • Carol P. Somkin • Lynn M. Ackerson • Saskia R. J. Thiadens
Abstract Breast cancer patients have voiced dissatisfac- tion regarding their education on breast cancer-related lymphedema risk and risk reduction strategies from their clinicians. Informing patients about lymphedema can con- tribute to decrease their risk of developing the condition, or among those already affected, prevent it from progressing further. In this cross-sectional study, a lymphedema awareness score was calculated based on responses to a brief telephone interview conducted among 389 women diagnosed with invasive breast cancer at Kaiser Permanente Northern California from 2000 to 2008 and had a previous record of a lymphedema-related diagnosis or procedure in their electronic medical record. During the telephone interview, women self-reported a lymphedema clinical diagnosis, lymphedema symptoms but no lymphedema diagnosis, or neither a diagnosis nor symptoms, and responded to questions on lymphedema education and support services as well as health knowledge. Multivariable logistic regression [odds ratio (OR) and 95 % confidence interval (CI)] was used to determine the associations of selected sociodemographic and clinical factors with the odds of having lymphedema awareness (adequate vs. inadequate). The median (range) of the lymphedema awareness score was 4 (0-7). Compared with patients \50 years of age, patients 70? years of age at breast cancer diagnosis had lower odds of adequate lymphedema aware- ness (OR 0.25; 95 % CI 0.07, 0.89), while patients 50-59 and 60-69 years had greater odds of adequate awareness although not statistically significant (OR 2.05; 95 % CI 0.88, 4.78 and OR 1.55; 95 % CI 0.60, 4.02, respectively; p for trend = 0.09). Higher educational level and greater health literacy were suggestive of adequate awareness yet were not significant. These results can help inform educa- tional interventions to strengthen patient knowledge of lymphedema risk and risk reduction practices, particularly in an integrated health care delivery setting. With the growing population of breast cancer survivors, increasing patient awareness and education about lymphedema risk reduction and care after cancer diagnosis is warranted.