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What You Need to Know About Lymphedema

By Ginny Vincent, MOTR/L, MLD/CDT, occupational therapist certified lymphedema therapist at UHC

Removing lymph nodes is an important part of breast cancer treatment. This allows doctors to determine whether cancer has spread from its primary site.

Lymphedema is an abnormal swelling that can develop in the arm, hand, breast, or torso on the side where your lymph nodes were removed. This is called the affected side.

Lymphedema develops when the lymph vessels in an area are no longer able to carry all the fluid away from the area. If this happens, the fluid can build up and cause swelling.

Lymphedema can develop suddenly or gradually. It can happen soon after surgery or can develop months or years later.

Studies show that the risk of developing lymphedema is different based on how the lymph nodes were removed. There are two types of surgeries used to remove lymph nodes.

  • Sentinel lymph node biopsy: between 1 and a few lymph nodes are removed from the armpit to check for cancer. With a sentinel lymph node biopsy, the risk of developing lymphedema is low.
  • Axillary lymph node dissection: more lymph nodes are removed from the armpit. This is done to remove additional lymph nodes that may have cancer. With an axillary lymph node dissection, the risk of developing lymphedema is higher than it is with a sentinel node biopsy.

Damage to your lymphatic system can also increase your risk of developing lymphedema. The following things can damage your lymphatic system:

  • Radiation therapy to your armpit
  • An infection after surgery
  • Severe injury to your surgical area or the affected arm (such as a serious burn or wound)
  • Tumor growth
  • Weight gain after treatment, or being overweight

Some mild swelling after surgery is normal. This swelling may last for up to 6 weeks, but it is temporary and will gradually go away. You may also feel pain or other sensations after surgery, such as twinges and tingling. These feelings are common and are not necessarily signs of lymphedema.

The following are signs of lymphedema:

  • A feeling of heaviness, aching, or pain on the side of your surgery
  • A tight feeling in the skin of your arm, hand, or breast
  • Decreased flexibility in your arm, hand, or fingers
  • Swelling or changes in your skin, such as tightness or pitting (skin that stays indented after being pressed)

You may notice lymphedema for the first time during or just after one of the following events:

  • Injury
  • Infection
  • Burn
  • Strenuous activity
  • Significant weight gain
  • Air travel (because of pressure changes)

These events probably are not the cause of the lymphedema, but they may make the swelling noticeable. This initial swelling may get better or even go away in 1 to 2 days.

Call your doctor if you notice that you have any signs of lymphedema. Look for signs of infection, such as your arm becoming swollen, painful, red, or warm. Call your doctor if you notice any of these signs, even if they go away.

An infection in the arm or breast on your affected side is serious because it may get worse quickly. If you have an infection, your doctor may prescribe antibiotics or order more tests, such as an ultrasound or magnetic resonance imaging (MRI).

There is no way to know who will develop lymphedema, but there are things you can do that may lower your risk:

  • Exercise and stretch your muscles on a regular basis. Don’t overwork your body; if you feel discomfort, take a break.
  • Maintain or safely work towards a healthy body weight.
  • If you get a cut or scratch on your at-risk arm or hand, clean the area with soap and water and apply antibacterial ointment such as Bacitracin® or Neosporin®. Cover the area with a bandage.
  • If you get a burn on your at-risk arm or hand, apply a cold pack or cold water for 15 minutes, clean the area with soap and water, and cover it with a bandage.
  • Watch for signs of infection, including redness, swelling, increased heat, or tenderness.
  • Blood draws and injections (shots) in your at-risk arm
    • If you had a sentinel lymph node biopsy, it’s better to have your blood drawn and shots given on your arm that’s not at risk for lymphedema. However, you can use your at-risk arm if needed.
    • If you had an axillary lymph node dissection, always use your arm that’s not at risk, unless your doctor tells you it’s okay.
    • If lymph nodes were removed on both sides of your body, talk with your doctor about which arm would be safest to use.
  • Be careful not to get sunburned. Use sunblock with an SPF of at least 30. Reapply it often.
  • Use insect repellent to avoid stings and bug bites.
  • Use a lotion or cream daily to help protect the skin on your at-risk arm and hand. Don’t use scissors to cut your cuticles; instead, push them back with a cuticle stick.
  • Wear gloves when washing dishes, gardening, or cleaning with harsh detergent or steel wool.
  • Be careful if you shave under your at-risk arm; consider using an electric razor. If you get a cut while shaving, take care of it following the instructions above.
  • Don’t use heating pads or hot-packs on your at-risk arm or shoulder.
  • Take off any tight or heavy jewelry or clothing that has tight elastic and leaves a mark on your arm. These things can lead to swelling.

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