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Breast Cancer Patients' Fear of Developing Lymphedema
Far Exceeds Risk (???)

The following comment was sent to the writer of the Press Release, which contained some of the more inflammatory statements which were not in the original article. A shorter, more scientific response was sent through the on-line author submission channel for publication in the on-line version of the Journal. It has been accepted by the Editor of the Journal of the American College of Surgeons for publication.

Comments on American College of Surgeons' Press Release Dated February 25, 2013

Re: Breast Cancer Patients' Fear of Developing Lymphedema Far Exceeds Risk

Breast Cancer Patients' Fear of Developing Lymphedema Far Exceeds Risk

New Journal of the American College of Surgeons study reveals trends in patient worry and risk-reducing behaviors in women undergoing breast cancer treatment.

Chicago (February 25, 2013): Women who have had the lymph nodes under their arm surgically removed during breast cancer treatment are warned to avoid certain practices that can cause lymphedema—a condition that causes chronic, painless swelling in the arm. Now, a new study published in the March issue of the Journal of the American College of Surgeons suggests that the vast majority of women who undergo breast cancer operations worry about developing this complication and that this fear far exceeds their actual risk of getting lymphedema. In fact, most women adopt four to five commonly recommended measures to prevent this incurable condition despite little data supporting the efficacy of these precautionary behaviors.

The conclusions highlighted in the press release are based on a biased selection of a lymphedema measurement standard and the results of a study of inadequate length.

There is general consensus that there is no standard method for definition and measurement of lymphedema. Some measures are more sensitive and, when used, yield higher estimates of lymphedema incidence than would be obtained using less sensitive measures [Armer and Stewart 2005]. Of the four commonly used methods of defining lymphedema investigated by Prof. Armer (i.e. 2-cm circumferential change, 200-mL volume change, patient-reported signs and symptoms and 10% volume change), the method selected in the McLaughlin study is by far the least sensitive measure and defines the lowest lymphedema incidence. Choice of a less conservative measure would have resulted in a more appropriate match of patient concerns with their risks of lymphedema. A 6% excess matches the patient subjective rate in a study by Edwards in 2000. And a 3% rate is being used in current studies of the prevention of lymphedema.

A biased selection of lymphedema measure leads to another inaccurate conclusion. Current medical and economic studies support early detection and prevention of disease as a cost-effective means of avoiding progression to harder-to-treat stages. The "prospective surveillance model" is a current proposed lymphedema care delivery system that would define early-stage breast cancer-related lymphedema when swelling reached 3% during the first year after breast cancer treatment. Lymphedema detected with this criterion would be treated with an inexpensive 20- to 30-mmHg compression sleeve for one-month periods. [Stout Gergich 2008, Stout 2012] It is believed that maintaining the lymphedema at a sub-clinical stage during the first year will prevent or retard the destructive tissue changes in a swollen lymphedema limb that define the progression of lymphedema.

Another recently studied lymphedema care delivery model based on lymphedema early detection and intervention would provide manual lymph drainage (MLD) to the limb of a breast cancer patient from day 2 after treatment and throughout the first year. This concept is applied in a six-month study to trial groups undergoing sentinel lymph node biopsy (SLNB) and axillary lymph node dissection (ALND), with and without radiotherapy. The investigators measured percent excess arm fluid and provided intervention to all members of the intervention group. While average excess fluid due to lymphedema in the women in the control group, who received no MLD, grew monotonically from zero to +10% at 6 months, the average excess fluid dropped monotonically in the MLD group from +1% to -1.5%. "This study demonstrates that regardless of the surgery type and the number of the lymph nodes removed, MLD effectively prevented lymphedema of the arm on the operated side. Even in high risk breast cancer treatments (operation plus irradiation), MLD was demonstrated to be effective against arm volume increase." [Zimmermann 2012].

Dr. McLaughlin ought to give women a bit more credit than to posit "And because women worry about that disfiguring process, they adopt practices that are basically grounded in myth, not fact." Women are also concerned about the additional risk of infection that is connected with lymphedema, the pain and secondary musculoskeletal conditions caused by the additional limb weight, neurological conditions such as carpal tunnel syndrome which are connected with the tissue swelling, and inability to type or dice vegetables with swollen fingers. (It is a myth that lymphedema is a "painless swelling of the arm".) Many recommended risk-reduction practices are based on the clinical and societal experiences of a lymphedema-aware medical community in Europe and Australia over the last 50 years. They may not be "evidence-based" but are hardly "myths".

The paper states "However, 90% of women who will develop lymphedema do so within 3 years of breast cancer treatment.1,2" when in fact Petrek2 says 77% at 3 years and Norman1 finds 80% at 2 years and 89% at 3 years. Exaggeration to make a point may be appropriate in a work of fiction, but it is bad taste in a medical journal. The onset of lymphedema after surgical breast cancer treatment may not occur until 7 (range 1-37) months. After a combination of surgery and radiotherapy the onset of lymphedema may be a longer 12 (range 1-52) months, and for radiotherapy only, 25 (range 6-156) months [Pierquin 1986]. The 12-month duration of the study is not long enough to make any statements on relationships between lymphedema and radiation therapy.

The final suggestions of the author for further research aimed at better predicting which women are at higher risk of lymphedema allowing targeted prevention and intervention strategies, and individualized plans for risk-reducing behaviors, are appropriate and well taken. But minimizing the risk of lymphedema by selecting biased measures, and then sending the "average woman" off into survivorship unprepared for its occurrence until it is too advanced to treat economically, is not wise. Giving the patient the tools for prevention and self-treatment if it becomes necessary is empowering, and should not be anxiety-provoking.

Robert Weiss, M.S.
Lymphedema Patient Advocate