Lymphedema

Lymphedema happens when lymph fluid builds up in the hand, arm, breast, chest wall, or under the arm on the side where you had breast cancer and received treatment, resulting in swelling and other possible symptoms.

Breast cancer treatments that increase the risk of lymphedema are lymph node surgery, radiation to the lymph nodes, and taxane chemotherapy. Taxanes include paclitaxel (Taxol) and docetaxel (Taxotere).

Lymphedema can occur any time after treatment—even many years later. As fluid builds up and the area swells, it can cause pain, reduced movement, and in some cases, serious infections.

Depending on how it is diagnosed, between 5% and 50% of people treated for breast cancer develop lymphedema. The type of breast cancer treatment and the number of lymph nodes removed during surgery can affect the chance of developing lymphedema.

If lymphedema develops, swelling can be reduced with early detection, treatment with a lymphedema specialist, and ongoing self-care. Even if swelling goes away, lymphedema can be a long-term side effect and may remain a health concern for the rest of your life. But with early detection and treatment, it is possible to manage lymphedema well and move forward with your life.

On this page, we’ll talk about what causes breast cancer-related lymphedema, stages of lymphedema, and how it is diagnosed.

Causes of lymphedema

Lymphedema happens when fluid in the lymphatic system, part of your immune system, collects in the arm or another part of the body. Some breast cancer treatments can disrupt or damage parts of the lymphatic system, causing fluid to collect. This can lead to swelling, skin changes, discomfort, and pain.

The lymphatic system includes:

• Tiny, thin vessels, like blood vessels, just under the skin that carry a nutrient-rich fluid, called lymph
• Lymph nodes—small, round organs that store white blood cells and filter bacteria and waste

Lymph fluid helps the body fight infection and then drains waste products to other parts of your body. To stay healthy, lymph fluid must keep moving.

Breast cancer surgery often involves cutting through the lymphatic vessels and removing lymph nodes, breaking up the pathways where lymph flows. Radiation to the lymph nodes can cause scarring. Taxane chemotherapy can increase the fluid volume between cells. In some people, the effects of these treatments can keep fluid from draining, creating a lymph fluid “traffic jam.”

At first, the tissue may feel firm and thick, but as fluid backs up, swelling and inflammation set in. If the swelling continues, the protein-filled fluid increases the risk for infection and more swelling.

The risk for lymphedema after surgery depends on:

• The type of breast cancer surgery you had
• The location and number of lymph nodes removed
• The way your body drains the fluid after surgery
• The way your body heals afterward
• Whether you had radiation to the lymph nodes
• Whether you were treated with taxane chemotherapy

Video: Nadiyah’s story: Moving beyond lymphedema

Discover Nadiyah's journey of staying active with lymphedema, spinal stenosis, and sciatica after a breast cancer diagnosis when she was 29 years old.

Early signs of lymphedema

Right after breast cancer surgery or radiation treatment, you may have swelling, called edema. Edema goes away as you heal and is not the same as lymphedema.

It’s important to seek medical advice from your healthcare team as soon you can at the first sign or symptom of lymphedema. The condition may develop slowly over time or more suddenly if you have an injury or infection in your arm. Early diagnosis and starting treatment quickly greatly improve lymphedema outcomes. Some signs to look for:

• You might notice changes in how your skin feels or moves before anyone else sees swelling, including your provider. Speak up about any change you feel. You know your body better than anyone.
• Before swelling can be seen, you may feel an achiness, heaviness, fullness, tingling, or increased warmth in your limb or hand. Monitor the tissue texture and skin on the side where you had surgery or radiation treatment:
  • Are the veins or tendons on one hand harder to see than they used to be?
  • Can you see valleys between your knuckles?
  • Do your clothes or jewelry fit tighter on the side of the cancer?
• Swelling might occur during the day and go away at night, or start and then go away when you elevate the swollen area. Follow up with your provider if these signs persist.
• Lymphedema after breast cancer treatment is most common in the arm, but can also occur anywhere in the body, including the breast, chest, abdomen, groin, or back.

Stages of lymphedema

Understanding the stage of lymphedema is important because with early detection and treatment, lymphedema stages 0 and 1 can be reversible. Lymphedema stages 2 and 3 are permanent. According to the National Comprehensive Cancer Network Survivorship Guidelines, there are four stages of lymphedema:

• Stage 0: There is no swelling of the arm, but there may be subtle feelings of heaviness or tiredness.
• Stage 1: There may be swelling on the side of the body that was treated. Normally when you press on part of the body with your finger, the tissue will bounce back when you remove your finger. When you press on the arm with a finger in stage 1 lymphedema, a dent may appear (called pitting). The area with lymphedema may be larger, stiffer, or heavier than the other side. Elevating the arm reduces the swelling.
• Stage 2: Pitting is less visible, and the swollen area may look or feel spongy. Scar tissue, also called fibrosis, may form, causing the swollen arm to feel larger and harder. Elevating the arm does not reduce the swelling.
• Stage 3: The swollen area is even larger, and motion of the arm may be limited. The arm may leak fluid or develop blisters. The skin of the arm may be very dry, scaly, or thick, and fungal infections or non-cancerous tumors may develop. Pitting generally is not present.

Detecting and diagnosing lymphedema

Before surgery or other treatment, having a baseline arm evaluation can be an important part of detecting lymphedema early, when it may be reversible. A baseline assessment can help your care team understand:

• What is normal for your arms before any breast cancer treatment begins
• If one arm was already bigger than the other (for example, if you use a dominant arm to play tennis)

Changes from baseline provide the best information for your care team to catch lymphedema early. The National Comprehensive Cancer Network recommends:

• A baseline measurement before lymph node surgery and other treatments
• Screening for lymphedema regularly after treatment

This is called surveillance. Surveillance may detect lymphedema early enough to reverse it.

Talk to your care team about a surveillance schedule that is best for you. While there is no specific medical guideline recommendation for surveillance schedules, some experts and research recommend:

• A baseline arm measurement followed by measurements every 3-6 months, depending on individual risk factors, for 3 years
• After that, arm measurements may be recommended every 6-12 months for a few more years.

If there is a change in your arm compared to your baseline before treatment, you can start lymphedema treatment quickly.

If you already started breast cancer treatment and did not have a baseline measurement, it’s still important to talk with your doctor about a surveillance plan. This may involve regular physical exams and using the unaffected arm for comparison to help with measurements.

You can also ask for a referral to see a lymphedema therapist to talk about your personal risk. Even if you have already started treatment, a clinical exam can provide important information to help you and your team monitor your situation.

Finding help for lymphedema

If you are diagnosed with lymphedema, it is important to see a certified lymphedema therapist who can work with you to reduce the swelling and other symptoms and support your ongoing care. Your cancer care team can make a recommendation. Some things to know:

• The Lymphology Association of North America (LANA) certifies lymphedema therapists using national standards. Therapists may also be certified by the program that trained them. Your healthcare provider also may have suggestions.
• Certified providers are often physical therapists or occupational therapists, as well as nurses, doctors, or massage therapists. When choosing a lymphedema therapist, ask about their training. You can search for lymphedema care therapists in your area at the National Lymphedema Network.
• Insurance coverage for lymphedema treatment can vary. Be sure to check with your health insurance plan about coverage.

Learn more on our Lymphedema treatments page.