What causes lymphedema and how to manage it

Imagine getting through cancer treatment only to be faced with a painful and debilitating condition that, in some ways, seems worse than the cancer itself. This is how some cancer survivors describe lymphedema.

A condition that’s often misdiagnosed or undiagnosed, lymphedema happens when the vessels and nodes that transport lymphatic fluid throughout the body are damaged or blocked. Fluid then builds up in the tissues just beneath the skin and causes swelling.

The swelling, which often occurs in an arm or leg, can be very painful. In the early stages, elevating the limb can help to reduce swelling, but as lymphedema progresses, swelling no longer goes away with elevation.

Other symptoms of lymphedema include:

  • Feeling of heaviness or tightness. This may be one of the first signs of lymphedema, even before you notice swelling.
  • Pain (although not everyone experiences pain)
  • Aching or discomfort
  • Restricted range of motion, trouble moving the limb
  • Recurrent infections
  • Hardening and thickening of skin. This is one of the late stages of lymphedema.

Any cancer or treatment that damages or blocks the flow of lymph can cause lymphedema. For example, during breast cancer surgery, underarm lymph nodes are often removed to check for cancer. This can interrupt normal lymph flow and cause fluid to build up, resulting in lymphedema. Surgery for uterine cancer, prostate cancer, lymphoma or melanoma can also cause lymphedema.

The risk of lymphedema increases with the number of lymph nodes affected. Sometimes the risk can be reduced by performing a sentinel node biopsy, in which fewer lymph nodes are removed.

Radiation therapy to the lymph nodes in the underarm, groin, pelvis or neck can also cause scar tissue to develop and block the lymphatic vessels.

In addition to cancer and its treatments, lymphedema may also result from burns, infections, trauma, obesity and venous insufficiency (the veins have problems transporting blood back to the heart), to name a few.

More rarely, lymphedema is caused by a genetic condition in which the lymph nodes or vessels are missing or aren't fully developed, called primary lymphedema. This type of lymphedema may be present at birth or appear during puberty or later in life.

Lymphedema caused by cancer or its treatment (secondary lymphedema) may develop within days or even years after treatment.

It is important to address lymphedema so it doesn’t become worse. Over time, the fluid build-up can cause complications such as infections (e.g., cellulitis), disfigurement, pain and disability. Deep vein thrombosis (DVT), or a blood clot that forms in a vein deep inside the body, is another known complication of lymphedema.

With early diagnosis and prompt treatment, the effects of lymphedema can be managed and controlled.

A certified lymphedema therapist can create a treatment plan to control swelling and keep other problems from developing. Treatment for lymphedema may include:

  • Taking care of your skin to prevent infections.
  • Wearing a compression garment or bandage over the affected limb to help move fluid out.
  • Using a compression device, a pump connected to a sleeve that wraps around the arm or leg and inflates, to help move fluid out.
  • Doing lymph drainage exercises to help draw out fluid from the limb and reduce swelling.
  • Using manual lymphatic drainage (MLD), a gentle form of massage, to help stimulate the lymphatic system.
  • Losing excess weight if overweight to improve lymphedema, particularly related to breast cancer.
  • Sometimes more extensive treatments, such as microsurgical procedures, are used to treat lymphedema.

If you’re going to have cancer surgery or radiation therapy, ask your doctor about your risk for lymphedema. Some ways to help decrease the risk of lymphedema include:

  • Avoid heavy lifting with the affected limb.
  • Protect your arm or leg from injury.
  • Elevate your arm or leg when possible.
  • Incorporate light exercises and stretching (per your doctor’s advice), but avoid strenuous activity until you’ve recovered.
  • Don't use a heating pad or ice on the affected area.
  • Avoid tight or constricting garments, including blood pressure cuffs.
  • Wear a compression garment.
  • Practice thorough and careful skin hygiene.
  • Stay hydrated.
  • Try to achieve your recommended body weight and body mass index (BMI). Lose excess weight if you’re overweight.
  • Understand your personal risk and how to identify early signs of lymphedema.

If you think you have lymphedema, alert your physician, who will rule out other medical issues that could be causing your swelling. If you are diagnosed with lymphedema, it’s important to work with a lymphedema therapist who is certified. He/she will help reduce your symptoms and educate you on how you can self-manage your symptoms.

The rehabilitation team at Edward-Elmhurst Health offers expert certified lymphedema therapists at five different locations who specialize in lymphedema management. Our therapists provide you with one-on-one support and a personalized, comprehensive treatment plan tailored to your unique needs.

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