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Lymphedema is swelling, usually of an arm or leg, that is caused by the disruption of the flow of normal lymph fluid. Lymphedema is a possible result of either removing lymph nodes (for example, during breast cancer surgery) or something disrupting the normal function of the lymph nodes. If lymphedema treatment begins quickly after symptoms appear, you can lower your risk of infection and complications.

What is lymphedema?

After breast cancer, lymphedema most often occurs following removal of a lymph node(s) and/or radiation in the armpit of the affected breast, both of which can be a necessary part of some breast cancer treatments.

The challenge of lymphedema is not being able to predict why some people develop it and some do not. We believe that those at risk for developing lymphedema can have onsets related to injury of the arm. You should avoid any blood pressure cuffs, blood draws or IV needles, tattoos, cuts or scrapes or other types of injury in an effort to prevent onset or exacerbation.

Certain cancer treatments also put you at higher risk. As a result, each woman receiving breast cancer treatment sees a lymphedema clinician in one of our clinics, where we will assess individual risk factors and provide recommendations and interventions for prevention. We use bioimpedance technology to “monitor” the lymphatic flow. This gives us a heads up that something may not be working properly. Early intervention can reduce, prevent and sometimes even reverse lymphedema.

What are the signs and symptoms of lymphedema?

The main symptom of lymphedema is typically a gradual increase in swelling, although swelling may first appear suddenly. Those affected often describe a general tightness to the arm, a feeling of heaviness and fatigue, or easy tiring of the arm. If infection occurs, the area would appear red, hot, painful and more swollen. An arm with lymphedema is at higher risk for infection than an unaffected arm.

The earliest sign of lymphedema is a full, heavy ache in the back of the arm from which lymph nodes were removed that doesn’t go away after a day or two. The ache is uncomfortable but not painful. These signs and symptoms don’t always mean lymphedema and could be a result of treatment or healing, but should always be checked out.

Other symptoms of lymphedema may include:

  • Feeling of fullness, heaviness or tightness in the arm, chest or armpit area
  • Bra, clothing or jewelry doesn’t fit as normal
  • Aching or pain in the arm
  • Trouble bending or moving a joint, such as the fingers, wrist, elbow or shoulder
  • Swelling in the hand
  • Thickening of or changes in the skin
  • Weakness in the arm

When do I need to call the doctor?

If you notice any of these symptoms, or have any concerns about lymphedema and you’re not already seeing a lymphedema specialist, then you should notify your cancer surgeon right away. If symptoms of infection arise, this is serious and may require a trip to the emergency department.

What can I do at home?

The main course of therapy for lymphedema is still prevention and conservative treatments. Our lymphedema specialists work closely with our breast surgeons to make sure that all women at risk are educated and monitored in an effort to prevent the onset and worsening of lymphedema. Compression sleeves and massage therapy are the most common forms of prevention and treatment. It is important to be measured and fitted for sleeves to ensure that they are the correct size.

Being active and maintaining that activity is a huge component of prevention. Yoga, Pilates and lifting of light weights (when cleared by the surgery team) have all been shown to reduce the risk of lymphedema onset. If you are at high risk and showing early symptoms of lymphedema, we have at-home interventions you can do yourself such as self-massage, stretching and compression sleeves.

Do all women get lymphedema after breast cancer surgery?

No. A combination of lymph node removal and radiation therapy puts you at the highest risk of developing lymphedema. Even then, not everyone gets it. Who does and does not get lymphedema (and why) continues to be poorly understood. There is ongoing research to better understand the process and how to best prevent it. Since there is no way to predict who will be affected by lymphedema, our prevention clinic monitors and assess the journey of every individual under our care.

We time your follow-up visits for lymphedema assessment to coincide with your surgeon or plastic surgeon’s visits. For women who are showing early signs, we see them more frequently to ensure that our interventions are working and that they are not developing irreversible lymphedema. Lymphedema caught early can be reversed in many cases.

It is a myth that only overweight people are at risk of developing lymphedema. Being overweight is a risk factor, but BMI (weight and height ratio) is only one consideration. We have women with many different variables (chemotherapy, radiation, low BMI, high BMI, few lymph nodes removed to all lymph nodes removed) who are affected with lymphedema.

Treating Lymphedema

James Butterworth, MD, plastic surgeon, talks about lymphedema treatment and prevention.
Speaker 1: The mainstay of treatment is still prevention and conservative therapy. Avoiding injury to an arm that has had lymph nodes removed or radiation to the breast is critical. This involves avoiding IVs, tattoos, blood pressure cuffs, or scrapes and cuts to that side. In addition, prevention can also come in the form of exercise therapy, stretching or lightweight training. These have all been shown to help prevent lymphedema from occurring. As is the case at The University of Kansas Hospitals, we plug our patients in at the time of diagnosis or at their first visit with their oncologist or breast cancer surgeon to be educated on the signs and symptoms of lymphedema so they know when it occurs.

Start your path today.

Your journey to health starts here. Call 913-588-1227 or request an appointment at The University of Kansas Cancer Center.

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