Abstract
B
I received calls and emails from multiple institutions in the United States and Canada where institutional guidelines were altered to allow unfettered iatrogenic trauma to an at-risk limb, as physicians had read that the evidence now proves that there is no risk of causing lymphedema through medical procedures on an at-risk limb, and risk reduction behaviors had been completely debunked. In this case, proof did not drive clinical practice, but widespread lack of knowledge and a superficial reading of abstracts and summaries drove clinical practice in a manner that disempowered patients and has the potential to harm them.
Lymphedema is a clinical diagnosis, and the Massachusetts General group has defined it as a volume increase of 10%. This definition is inherently arbitrary. The sensitivity and specificity are unknown. Other studies have found significant clinical issues at 5% limb volume change (LVC). 3
To quote Andrea Cheville MD: “There is no one value or standard you can use to say, ‘OK, if you meet that you have lymphedema, and if you don't, well then you don't have it,’” says Dr. Cheville. “For example, there may be no size or volume changes in the arm, but you could have subtle hand swelling or pitting on the arm. So it's important not to be too locked into arm measurements alone, as that can create a false sense of security. You also need to be watching the arm and looking for the loss of what we call ‘anatomic architecture’—an inability to see the veins and tendons in the arm as clearly, or less pronounced knuckles, or skin that is less wrinkled and therefore looks younger.” 4
Lymphedema can exist without volume increase. Measurements of volume by a perometer are rapid and reproducible and allow large collections of data, but those data must be interpreted with the full understanding that volume increase does not equal lymphedema. The disease can exist in areas of the body that are not measured by the perometer—hands/trunk/breasts and it is not a static disease. Any volume measurement must be both paired with clinical observation. Quoting Stanton and Modi: “Measurement of arm volume may not detect mild lymphedema, and close inspection of the arm is necessary.” 5
A recent article in Lymphatic Research and Biology directly measured the lymphatic pump in women who developed breast cancer-related lymphedema (BCRL) and found that women with high lymphatic pump volumes were at increased risk. This is high quality evidence as it is not an indirect measure of lymphatic functioning, but a direct visualization of the lymphatic pump, and perometer readings and careful observation of subtle changes were also used to diagnose lymphedema. 6
Risk reduction behaviors must be judged by number needed to harm, as iatrogenic trauma of an at-risk limb is not a beneficial treatment, but a possible triggering event for an incurable disease.
Rather than change institutional protocol to allow and encourage iatrogenic trauma to at risk limbs, with no patient consent, lymphedema risk reduction behaviors should be considered as patient education and shared decision making.
Brunelle and coworkers have expressed that lymphedema risk reduction behaviors are a burden to patients. This is not concordant with my clinical experience. I find that patients are empowered rather than burdened by information. They often feel extremely frustrated and angry when their concerns are denied or dismissed. Women who develop BCRL almost universally express lingering anger at their lack of information and anticipatory guidance from their health care providers. Education about BCRL and risks has led to clinical improvements. 7
On a patient oriented website that I helped create, we have images of BCRL from a very informed patient, a nurse with bilateral breast cancer whose lymphedema was quite severe despite thorough treatment. She made an informed decision to use her at-risk but not actively lymphedematous arm for medical procedures. Ultimately, that arm also developed overt lymphedema when she strained it, but she made the decision to allow procedures with full understanding of the risk and benefit (www.stepup-speakout.org/What_does_lymphedema_look_like.htm).
Lymphedema risk reduction behaviors have been modified with high quality evidence, as the Physical Activity and Lymphedema (PAL) trial showed that patients with stable lymphedema or at risk of lymphedema could safely exercise their limbs, when it was done with care. 8
Lymphedema is a complex disease, not simply swelling. Risk factors have varied due to variations in research methods. There is good evidence that women with genetic predisposition for primary lymphedema are at extremely high risk for developing BCRL. 9 Other risk factors are axillary seroma, cording, 10 early swelling, infection, and high lymphatic pump volumes. The literature is most consistent on infection, lymphatic pump function, radiation, extent of surgery, and obesity as risk factors.
As lymphedema can be subtle, it is often unclear when the risk reductions cross from primary to secondary prevention.
Clearly more research is needed, but education of both patients and providers is needed as well. The move to change clinical practice to allow at risk limbs for all medical procedures was not based on evidence or proposed by Brunelle and coworkers and yet it happened and continues to happen.
I appreciate the group clarifying that they don't advocate a no-risk position for all patients and would encourage them to clarify this with all practitioners and institutions that have misinterpreted or extrapolated their research.