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Common Questions About Breast Cancer-Related Lymphedema

This information answers common questions about breast cancer-related lymphedema.

What is lymphedema?

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 arm’s lymph vessels are no longer able to carry all the fluid out of the arm.

What puts me at risk for lymphedema?

Having axillary lymph nodes removed changes the way fluid in your arm circulates. Studies show that the risk of developing lymphedema varies based on how the lymph nodes were removed. There are 2 types of surgeries used to remove lymph nodes:

  • During a sentinel lymph node biopsy, between one and a few lymph nodes are removed to check for cancer. Studies show that the risk of developing lymphedema is very low in people who have had a sentinel lymph node biopsy.

  • During an axillary lymph node dissection, a wider incision is made and more lymph nodes are removed from the armpit. This is done to remove additional lymph nodes that may have cancer. Studies show that the risk of developing lymphedema is higher in people who have had an axillary lymph node dissection than in those who had a sentinel node biopsy. This is because removing axillary lymph nodes changes the way fluid in your arm circulates.

Studies have shown that people who have the highest risk of developing lymphedema have had:

  • Radiation therapy to the armpit (axilla)

  • An infection after surgery

  • Severe injury to the affected arm (such as a serious burn or wound)

  • Weight gain after treatment or were overweight

How long does it take for lymphedema to develop?

Lymphedema can develop soon after surgery, but it can also develop months or years later.

How can I lower my risk of developing lymphedema?

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

  • Use a moisturizer daily to help protect the skin on your affected arm and hand.

  • Use care to prevent cuts, burns, and bug bites, which can lead to an infection.

    • If you do get a cut or bite on your affected arm or hand, clean the area well and apply antibacterial ointment. Cover it with a bandage.

    • If you get a burn, apply cold water for 15 minutes, clean the area well, and cover it with a bandage.

  • Be careful if you shave under your affected arm. If you get a cut while shaving, wash the area with soap and water and apply antibacterial ointment.

  • Manicure your nails carefully. Push your cuticles back instead of cutting them.

  • Use insect repellent to avoid stings and bug bites.

  • Wear gloves when gardening, cleaning, or washing dishes.

  • If you notice any swelling in your affected arm or hand, remove:

    • Tight or heavy jewelry

    • Clothing that has tight elastic and leaves a mark on your arm

  • Do not use heating pads or hot-packs on your affected arm or shoulder.

  • Take care not to get sunburned. Use sunblock with an SPF of at least 30. Reapply it often.

  • Try to use your unaffected arm for injections, blood tests, and blood pressure measurements. If lymph nodes were removed on both sides of your body, talk with your doctor about which arm would be safest to use.

  • Maintain or safely work towards a healthy body weight.

  • Exercise and stretch your muscles on a regular basis. Do not overwork your body; if you feel discomfort, take a break.

How will I know if I have lymphedema?

Some mild swelling after surgery is normal and will go away with time. 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

  • The skin of your arm, hand, or breast feels tight

  • 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 ir just after one of the following events:

  • Injury

  • Infection

  • Burn

  • Strenuous activity

  • Significant weight gain

  • Air travel (because of pressure changes)

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

What should I do if I think I have lymphedema?

If you notice that you have any signs of lymphedema, call your doctor. 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 your affected arm or breast is serious because it may get worse quickly. If you have an infection your doctor may prescribe antibiotics. He or she may also order more tests, such as an ultrasound or magnetic resonance imaging (MRI).

What is the treatment for lymphedema?

Treatment for lymphedema can be simple or intensive. An occupational or physical therapist who specializes in lymphedema can help choose the best program for you.

Treatment has 4 main components:

  • Skin care: The suggestions listed earlier are examples of ways you can take care of your skin to prevent infections.

  • Compression: Compression helps prevent more fluid from building up. It can be applied by wearing an elastic garment, low-stretch compression bandages, or other inelastic compression garments that are often used at night.

  • Exercise: An exercise program can help stimulate your lymph vessels. It’s important to slowly increase the exercise so that your arm muscles get used to it gradually.

  • Manual lymphatic drainage (MLD): MLD is a gentle form of massage. Do not get a vigorous massage on your affected arm or hand because it can cause your body to make more fluid.

It takes time to figure out the best plan to keep the swelling under control. Talk with your lymphedema therapist about any problems you have with your treatment. He or she can help you change your treatment plan so it works better for you.

Are there any medications I can take to reduce the swelling?  

No. Water pills should not be used to manage lymphedema on a long-term basis. Antibiotics are used to treat short-term and chronic infections. They have no direct effect on the lymphedema.

Will the swelling ever go away?

The swelling may remain mild and stable, or it may get worse over time. There is no way to predict what will happen. Taking part in a treatment program to manage the swelling will help keep it under control.

What can I do to prevent the lymphedema from getting worse?

Continue to follow the suggestions in this resource for lowering your risk of swelling or infection. Also, the suggestions listed below may help prevent it from getting worse.

  • Elevate your affected arm and hand above the level of your heart. This may reduce the swelling for a period of time, especially if the swelling is new. Over time, you may find this does not work as well to reduce the swelling.

    • While you’re sitting, rest your affected arm on a few pillows next to you or on the back of a couch. Do not hold your arm over your head for long periods of time. It may cause the muscles of your arm to get tired.

    • If you sleep on your back, rest your arm on 1 or 2 pillows at your side. If you sleep on the opposite side of your surgery, rest your arm on 1 or 2 pillows in front of you.

  • Notice when the swelling in your arm gets better or worse, such as in the morning after sleeping, or in the evening after using it all day. Notice what you do with your arm, such as carrying heavy bags, typing, or chopping vegetables. Some people find that using the arm helps reduce the swelling, while other people find that it makes the swelling worse. If something you do makes your arm uncomfortable or swollen, take breaks when you do it. You may also try wearing a compression garment during these activities.

  • Wear a compression garment or low-stretch lymphedema bandage when you travel in an airplane. Do not use an AceTM bandage. It should extend to your hand, even if you use one that ends at your wrist at other times. If you are wearing compression garments for the first time, you should test them before your flight.

    • Make sure the garment is comfortable enough to wear the entire flight.

    • Make sure the garment does not cause new swelling in your hand or arm. 

    • Lymphedema bandages are more bulky and difficult to apply than compression garments, but they may be more comfortable for longer flights. Ask your lymphedema therapist to show you how to apply them properly.

Is it safe to resume my prior activities and exercise routines?

We encourage you to continue all of the activities that you enjoy. Research has shown that no activity level, occupation, or hobby is related to developing lymphedema. In fact, weight training has been shown to be safe in women with lymphedema and may help prevent it from developing. You should resume activities slowly and gradually. You may choose to modify an activity if you notice that it causes more swelling or discomfort in your arm. Talk with your doctor and lymphedema therapist for help modifying your exercises or activities.

If you have swelling in your arm or hand, wear a compression garment or bandage when:

  • Doing resistance exercises 

  • Doing repetitive activities

  • Doing vigorous house cleaning

  • Playing sports

How do I cope with my feelings about having a diagnosis of lymphedema?

It is common to feel anger and frustration when you learn that have lymphedema. Some people feel depressed. If you are having trouble coping with your feelings, tell your doctor or lymphedema therapist. Knowing that you have choices in treatment may help give you a sense of control. A lymphedema therapist can explain your options and help you decide on a treatment plan that will fit into your lifestyle. The swelling can usually be controlled with proper treatment.

What are the potential complications of lymphedema?

Infections tend to be more serious in people with lymphedema. They can be harder to treat and spread more quickly. Having an infection in the affected arm, hand, breast, or torso on the side where your lymph nodes were removed can make the lymphedema worse. Call your doctor right away if you have any signs of infection, such as:

  • Fever or chills

  • Pain

  • Redness or warmth

  • Increased swelling

If you have infections that keep coming back, ask your doctor if you should see an infectious disease specialist.  

  • Not all pain or new sensations are the result of lymphedema; they can develop for many reasons. Lymphedema can increase your risk for other disorders that cause pain. Talk with your doctor if you are having pain or new sensations.

​Causes of arm pain include:

  • Infection

  • The swelling itself

  • Deep vein thrombosis (DVT), which is a blood clot in a vein deep in the body

  • Other disorders such as:

    • Tendinitis of the shoulder

    • Golfer's” or “tennis” elbow

    • Frozen shoulder

    • Carpal tunnel syndrome

    • A pinched nerve in the neck

    • Neuropathy (nerve damage)

If you have any questions about lymphedema, talk with your lymphedema therapist. If you are not seeing a lymphedema therapist but would like to, talk with your doctor or nurse.

Resources

National Lymphedema Network
Provides educational materials and community referrals.
Telephone: (415) 908-3681
Hotline: (800) 541-3259
 
American Cancer Society
Provides information about the diagnosis and treatment of lymphedema.
(800) 227-2345
 
Cancer Information Service (CIS)
Provides information about the diagnosis and treatment of lymphedema.
1-800-4-CANCER
 
Step Up, Speak Out
Provides resources and educational materials about lymphedema