The pain of lymphedema

Monday, November 29, 2010; 6:16 PM

Lymphedema hurts

As one of the patients who was interviewed for Ranit Mishori's article "Cancer's little-known aftershock" [Nov. 9], I am so pleased that you published this article exploring the patient perspective of lymphedema, while including solid medical references.

I would like to respond to Nicole Stout's Nov. 15 letter that lymphedema does not cause pain.

In my personal and clinical experience, and as is well documented in the medical literature, lymphedema - which is an inflammatory process as well as a physical swelling - does cause pain. I have been fortunate to hear an excellent lecture from Andrea Cheville of the Mayo Clinic at the September 2010 national lymphedema conference, as she presented a comprehensive review of the pain associated with lymphedema and how to treat it.

One slide stated: "Does Lymphedema Cause Pain?" and the answer is yes - through inflammation and irritation of pain nerve fibers.

Pain in lymphedema isn't just about joint issues: lymphedema occurs in breasts, trunks, genitals - and it hurts. Often, the first sign of lymphedema, before there is overt swelling, is discomfort.

Stanley Rockson of Stanford University has a current clinical trial to attempt to treat lymphedema by treating the inflammation.

Lymphedema hurts, and the pain is variable and usually improves with treatment. Of course, any new or unexplained swelling should be investigated medically, but to tell a patient with lymphedema that his or her pain is fictitious and not due to disease is to deny their reality.

As we spoke about in the article, lymphedema is under-recognized, under-treated and under-studied. Patients are left to fend for themselves all too often.

As the pain associated with lymphedema is often a harbinger of overt swelling, patients at risk for lymphedema need to know that pain associated with lymphedema is real, and should be acknowledged and treated.

Judith Nudelman, MD Clinical Assistant Professor of Family MedicineAlpert Medical SchoolBrown UniversityProvidence, R.I.

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