During a mastectomy or lumpectomy, your surgeon may choose to remove lymph nodes in your armpit in order to make sure there are no residual cancer cells and to reduce the chance of breast cancer recurring. As a result, lymphedema—a chronic swelling that can occur after surgical removal of lymph nodes— can be a common side effect of breast cancer surgery.
Let’s start with the basics. What exactly are lymph nodes? What is your lymphatic system and why do you need it? Lymph nodes are small organs filled with lymph–a colorless fluid made up of white blood cells. You have lymph nodes in your neck, armpit, chest, belly, and even your groin. Lymph circulates between these lymph nodes and throughout your entire body via the lymphatic system, which works to filter out toxins in your body to fight infection. If your lymphatic system isn’t working right, your body can’t fight infections.
And if you have lymph nodes removed in surgery, such as breast cancer surgery, it can impact your lymphatic system in the form of lymphedema. Lymphedema is characterized by the buildup of lymphatic fluid that causes painful and sometimes debilitating swelling in the affected limb. The main symptom of lymphedema is swelling (often in your limbs), which can cause problems fitting into clothes, or jewelry and watches starting to feel tight. At first, the swelling may come and go. It may get worse during the day and then go down overnight. At its worst, things like brushing your teeth or buttoning your shirt can become difficult. Lymphedema can be painful, give you a feeling of heaviness and tightness, restrict your range of motion, and cause infection.
In addition to the discomfort, lymphedema can be embarrassing and make you feel self-conscious. Your appearance may change due to swelling and in some cases, you may have to restrict your activities.
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Lymphedema develops in stages (from Stage 0 to Stage 3) and once it has reached Stage 2, it becomes a chronic condition that requires management of uncomfortable symptoms for the rest of your life. The treatment requires patients to make considerable lifestyle changes and maintain daily and lifelong care to decrease swelling and prevent swelling flare-ups and infections.
Fifty percent of breast cancer patients who have lymph nodes removed in surgery are likely to get lymphedema. A recent study showed that Black women are 3.5 times more likely to get diagnosed with lymphedema compared to white women. Since Black women are significantly more likely than white women to be diagnosed at a more advanced stage, have larger tumors, and cancer in their lymph nodes, they are more likely to have lymph nodes removed in breast surgery.
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At this point, the mainstay of lymphedema treatment is compression garments coupled with manual lymphatic drainage—a special form of massage therapy.
With that said, what’s the good news?
Early detection can change the game! We now have a technology from a company called ImpediMed that measures and tracks your fluid buildup in your at-risk limb. SOZO® is capable of detecting excess fluid at the subclinical level, where lymphedema is still reversible. The test is non-invasive and painless. It’s sort of like a scale that you step on and step off and you have the results in less than 30 seconds. The SOZO device is used to measure your L-Dex score and can help your doctor identify early lymphedema and prescribe the right treatment plan. Results from initial trials show this early detection combined with at-home intervention using standard compression therapy can reduce the progression of lymphedema by 95%.
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The problem is that a large proportion of cancer patients—and many physicians—are not aware that chronic lymphedema is preventable. If you have even the slightest symptom, you must act on it immediately. Many breast cancer patients don’t experience symptoms until swelling has developed, and that may be too late for prevention. Therefore, the opportunity to prevent lymphedema is before you experience noticeable swelling. Advocate for yourself or a loved one and start the conversation with the cancer care team immediately. If you’re not sure how to start the conversation, start by asking:
- Do you have a lymphedema management program?
- What tools do you use for early detection of lymphedema? Do you offer L-Dex® testing on the SOZO® device?
- How long do you monitor patients for lymphedema after cancer treatment?
If you want more information and resources about lymphedema treatment and prevention, especially if you have just had surgery for breast cancer, contact the LIVE Today Foundation, at www.live-today.org
