No Rules: Lymphedema and the Young Woman at Risk
Sarah Stolker, MSPT
From the February 2012 issue of YWBCP magazine
By Sarah Stolker, MSPT
Certified Lymphedema Therapist
Lymphedema Association of North America
Lymphedema in young women requires an entirely different set of rules. Technically, it is the same physiologic process. The lymph nodes are biopsied, removed and possibly irradiated, resulting in poor performance. The lymph nodes that silently sequestered cellular waste products like protein molecules, long-chain fatty acids and foreign objects call attention to themselves by not working well. Young women undergoing treatment for breast cancer, however, tend to have lymphedema on their radar screens. They are proactive and educated about the road they are on.
Traditionally, health care professionals have been fairly tight-lipped about lymphedema soon after breast cancer therapy. The rationale: No need to worry someone unnecessarily about something they cannot prevent. I completely disagree with this philosophy. Especially for young women with breast cancer, information is medicine. As a therapist, I love the smart and fearless women in this category, and I am proud to see the rules changing.
Over the past several years, the “at-risk” portal has changed significantly and for the better. Women are encouraged to seek the advice of a certified lymphedema therapist for education regarding lymphedema prevention strategies. During this session, a trained therapist takes a thorough cancer treatment history to more accurately predict risk for lymphedema. Certain factors such as age, hand dominance, body mass index and the presence of young children at home can impact lymphedema risk. Other medical factors are important as well: postoperative infection or seroma (a pocket of fluid in tissue or an organ that can occur after surgery) formation, axillary web syndrome and lymph node status. So this session provides more information – thus reducing anxiety – and allows for baseline measurements of both arms to aid with early lymphedema detection. Finding out what you can do to reduce lymphedema risk is helpful, and for many women it is empowering. Studies show that baseline measurements of the limbs can vastly improve the detection of lymphedema, particularly if these measurements are done preoperatively. There are some areas in the country where preoperative consultation with a lymphedema therapist is standard, although this is not yet the case in St. Louis. Let’s go, St. Louis!
Recently, another tool has changed the landscape for baseline arm measurements. Bioimpedance spectroscopy (BIS) passes an undetectable electrical current and measures how long it takes to travel through each limb. Since the current travels faster with increased fluid, the rate that the current travels helps estimate the volume of fluid in the limb. What this tool is really measuring is something called extracellular fluid – that is, fluid between the cells and just underneath the skin. In cases where the eye (and even the tape measure) cannot detect any fluid, this tool can detect fluid accumulation.
A BIS reading gives you one measurement (called an L-Dex value) that is really the ratio between the at-risk limb and the uninvolved side. If your L-Dex value falls outside of “normal,” then you have the beginnings of lymphedema. L-Dex measurements can be positive up to eight months before visible lymphedema is detected. As with most technology like this, having a baseline measurement taken before treatment (i.e., surgery or radiation) enhances detection and allows for more accurate interpretation of the results. The down side? Many clinics and physician offices have not yet implemented bioimpedance testing, leaving many who know about this technology frustrated. It is coming, I promise.
The literature on lymphedema illuminates one key finding: No one can agree on the parameters used to diagnose lymphedema! The long and the short of it is this: A 2-centimeter size difference on a small arm is much more significant than a 2-centimeter difference on a large arm. As a result, no metric measurement can really stand up against a volumetric analysis. Taking measurements with a tape measure is the first step, but the second and more important part is translating the measurements for each arm into arm volume. This allows you to compare the volume of one limb to the other, giving you a percent volume difference such as, “The right arm is 6 percent larger than the left.” You can even get more specific when you take into account the hand dominance of the limb in question. If you are right-handed, then your right arm is likely to be up to 3 percent larger than the left. So, in the example given, the actual difference, as it relates to lymphedema risk, is 6 percent minus 3 percent, for a total volume excess of 3 percent in the affected arm. A 3 percent difference in limb size is considered the minimum guideline for clinical significance.
Another key development in the diagnosis of lymphedema is the addition of the classification “Latency: Stage 0 Lymphedema.” Previously, there were only three stages of lymphedema, and none of them described the phenomenon that occurs when a woman feels or senses that she has lymphedema but there is no detectable difference in limb size. This can make a woman feel like she’s going crazy. Latency-stage lymphedema is described as subclinical lymphedema. There are physiological changes happening in the tissues of the limb (increased protein content), but there is no measureable fluid accumulation. Lymphedema is occurring even though you cannot see it. Studies show treatment at this stage is critical in determining whether or not the individual will develop “true” lymphedema.
This brings us to the main course: treatment of lymphedema. The push for early diagnosis of lymphedema has two underlying goals: prevent the onset of lymphedema whenever possible and decrease the amount of treatment needed.
A very important study shows that the treatment of subclinical lymphedema with four weeks of compression therapy prevents progression to a more advanced presentation (Cancer 2008). So the more effectively we screen for lymphedema, the better we identify women at the subclinical stage. This could mean many things: fewer women progressing to full lymphedema, less need for standard lymphedema treatment with complete decongestive therapy (bandaging and massage) and fewer women with lifelong symptoms or complications of lymphedema.
We need more studies, including randomized controlled trials, but this information is promising. The take-home message for young women: Pay attention to your symptoms. The take home for clinicians: Screen regularly and educate women at risk. Isn’t this precisely what we tell women about breast self-examinations: Breast self-exams help detect breast cancer earlier, which leads to earlier treatment? It’s the same message for lymphedema.
For women not lucky enough to receive subtle warnings from their at-risk arm, you are not alone. In some cases, lymphedema is present from the moment you wake up from surgery. In others, it develops overnight. The question is often “Why? What did I do?” Understanding what occurred is critical so you don’t blame yourself or someone else.
There are two situations that result in lymphedema:
- The region is overwhelmed by excess fluid. This fluid can be from surgery, infection, injury or even weight gain. It can occur when you help a friend move or sit in a hot tub. This is called dynamic insufficiency. It may or may not be permanent, depending on whether or not the next situation is present.
- The second scenario happens when the lymphatic system isn’t functioning sufficiently. The system could have taken a major hit with surgery, radiation or trauma. For some reason, your lymphatic system isn’t working well enough to remove cellular waste, which results in an accumulation of protein in the region or limb. Protein pulls water into the limb, and there it stays. This is called mechanical insufficiency and is the hallmark of lymphedema. Lymphedema’s irreversibility results directly from protein accumulation and its affinity for water.
So, back to the beginning: Approximately 73 percent of women who develop lymphedema following treatment for breast cancer will do so in the first three years. It’s during this time that women with low-functioning lymphatic systems are “teased out” by situations that test it (i.e., increased fluid volume). Are these preventable? Sometimes. Recently, one of my patients with an at-risk limb was helping her paraplegic husband transfer into the passenger seat after he had a colonoscopy. He was weak and exhausted, and she was trying her best to keep him from falling while protecting her back. Did she think about lymphedema? No. This is remarkable because she already has lymphedema in the other arm, so she’s very aware of the risk of developing lymphedema in her at-risk arm. Regardless of how prepared you are, life can get in the way. In most circumstances, however, you can make choices that protect your at-risk limb. The National Lymphedema Network has a list of helpful risk reduction practices and even a position statement on airline travel for individuals at risk of lymphedema. That, my friends, is a whole article in itself.
My parting advice is to seek information from individuals trained to help: certified lymphedema therapists. Sometimes it helps to talk it out and get some pointers so you can keep going. In the meantime, this field continues to progress with the goal of one day wiping itself off the map.
Stout Gergich et al. Cancer. 2008, 112 (12): 2809-2819.
Petrek, J. et al. Cancer 2001, 92 (6): 1368-1377.