The Who, What, Where, When and Sometimes, Why.

Lymphedema

What is lymph?

Lymph is a milky fluid that contains white blood cells. White blood cells help fight infections.

Lymph vessels, like blood vessels, run all through the body. They carry lymph, cells and other material.

Lymph from tissues and organs drains into the lymph vessels and is carried to the lymph nodes where it’s filtered.

Lymph nodes are found throughout the body. The ones near the breast (see image below) can be affected by breast cancer treatment.

Axillary lymph nodes illustration

Source: National Cancer Institute (www.cancer.gov)  

What is lymphedema?

During breast cancer surgery (mastectomy or lumpectomy), some of the lymph nodes in your underarm (called axillary lymph nodes) may be removed. They are checked to see if they contain cancer cells.

When axillary lymph nodes are removed during breast surgery (with sentinel node biopsy or axillary dissection) or treated with radiation therapy, some of the lymph vessels can become blocked. This may prevent lymph fluid from leaving the area.

Lymphedema occurs when lymph fluid collects in the arm (or other area such as the hand, fingers, chest/breast or back), causing it to swell (edema).

The swelling may be so slight it’s barely seen or felt. Or, it may be so great the arm grows very large.

In severe cases, lymphedema can cause pain and limit movement. It also can be quite upsetting to have one arm larger than the other, even if the change is small.

Learn about sentinel node biopsy, axillary dissection and the risk of lymphedema.

For a picture of lymphedema, visit the Society for Vascular Surgery website.

Who gets lymphedema?

Lymphedema is related to axillary lymph node surgery and radiation therapy, but it’s not clear why some people get lymphedema and others don’t.

Some factors that increase risk include [22,24-28,213,220-222]:

  • Having axillary lymph nodes removed (the more nodes removed, the greater the risk)
  • Radiation therapy to the axillary lymph node area
  • Having axillary lymph nodes removed plus radiation therapy to the axillary lymph node area
  • Having a large number of axillary lymph nodes that contain cancer
  • Infections in the area after breast surgery
  • Being overweight or obese

Breast reconstruction and lymphedema

Whether or not a woman has breast reconstruction after a mastectomy does not appear to affect her risk of lymphedema [29-33]. The type of breast reconstruction a woman chooses also does not appear to affect risk [29-33].

How often does lymphedema occur?

Today, most people don’t get lymphedema since modern surgery removes fewer axillary lymph nodes than in the past.

Compared to the past, the cases that do occur are usually less severe in terms of the impact on movement and the way the arm looks. 

Axillary dissection versus sentinel node biopsy

In the past, people almost always had a procedure called axillary dissection to remove axillary lymph nodes.

Now, most people have a less invasive procedure called sentinel node biopsy. This procedure removes fewer lymph nodes than axillary dissection, so there’s less risk of lymphedema [22,24-25,34,220-222].

Women who have sentinel node biopsy are about 4 times less likely to develop lymphedema than those who have an axillary dissection [25].

One year after breast surgery [27,30,34]:

  • Fewer than 5 percent of women who had sentinel node biopsy develop lymphedema
  • 10-20 percent of women who had axillary dissection develop lymphedema

Learn more about sentinel node biopsy and axillary dissection.

When does lymphedema occur?

Lymphedema usually develops within 3 years of breast surgery [220-222]. However, it still can occur years after treatment ends [220-222].

If lymphedema occurs right after surgery, it usually only lasts a short time and then goes away.

Signs and symptoms

If you notice early signs or symptoms of lymphedema, talk with your health care provider.

Most cases of lymphedema cannot be cured. However, when caught early, treatment can reduce some signs and symptoms and stop them from getting worse.

Signs and symptoms of lymphedema include [22,220]:

  • Swelling in the arm or hand (for example, your rings or watch feel tighter)
  • Feeling of tightness, heaviness or fullness in the arm or hand
  • Feeling of tightness in the skin or a thickening of the skin
  • Pain or redness in the arm or hand  

For a picture of lymphedema, visit the Society for Vascular Surgery website.

Screening and diagnosis

The most common way health care providers check for lymphedema is by measuring upper and lower arm widths.

Measurements should be taken before surgery to have a comparison for measures taken after surgery [221].

Other screening methods include perometers, bioimpedance measures, water displacement, taking pictures, asking the person about their symptoms and special imaging of the lymph nodes called lymphoscintigraphy [22,36,220,222-223].

Some studies show monitoring for lymphedema within the first 3 months after surgery may lead to earlier diagnosis [214-215]. 

Treatment

Most cases of lymphedema cannot be cured. However, treatment can improve movement and reduce pain and swelling in the affected arm.

Standard lymphedema treatment includes complex decongestive therapy. This approach aims to decrease swelling and infection through a combination of [22,220,222]:

  • Skin and nail care
  • Compression bandages or sleeves (these apply pressure around the arm and help push lymph fluid out of the arm)
  • Exercises (closing and opening a fist, for example)
  • Manual lymphatic drainage (a special type of massage)
  • Physical therapy

Complex decongestive therapy usually is given in 15-30 sessions over 4-6 weeks [213]. After that, you continue the therapy on your own [213].

Other treatments may include [36,38-40,213,220,222]:

  • Exercise
  • Compression device (a pump connected to a sleeve that inflates and deflates to apply pressure to the arm)
  • Surgery
  • Weight loss

Before starting any of these therapies, discuss them with your health care provider.

Many therapies are given by a physical therapist. Your provider may recommend a physical therapist or you can find one through the National Lymphedema Network or the Lymphology Association of North America.

Other treatments for lymphedema, such as lymph node transfer and lymphovenous bypass, are under study [42-43,213,216].

Exercise

In the past, there was some concern exercise might increase the risk of lymphedema after breast cancer surgery and worsen symptoms in those who already had lymphedema.

However, after recovery from breast surgery, arm exercises (such as weight-lifting) don’t appear to increase the risk of lymphedema [39,44-46,217,222]. (It’s best to avoid strenuous exercise right after breast surgery though.)

Studies also show weight-lifting (moderate, in a supervised setting) can reduce symptoms in survivors with lymphedema, as well as improve body image, sexuality and physical strength [39,46-49].

Talk with your health care provider before starting an exercise program to manage lymphedema.

Learn more about the benefits of exercise for breast cancer survivors and find guidelines on physical activity for survivors.

Reducing risk

Although there’s no proven way to prevent lymphedema, you can:

  • Maintain a healthy weight
  • Be aware lymphedema is a possible side effect of treatment
  • Seek care when you first notice signs or symptoms
  • Take steps to reduce the risk of injury and infection

Injury or infection to the arm may trigger lymphedema [220]. So it’s best to take steps to reduce the risk of injury or infection.

Although the tips below haven’t been proven in clinical trials, they may work for some people (especially those who have had axillary node dissection). 

 Tips to reduce the risk of injury or infection to the arm

  • Treat infections of the at-risk arm and hand right away.
  • Wear gloves when doing house or garden work.
  • Keep skin clean and well-moisturized.
  • Use the arm not at risk when having blood drawn, getting injections or having blood pressure taken (if possible).
  • Avoid sunburn and excess heat from saunas, hot baths, tanning and other sources.
  • Don’t cut nail cuticles. Use a cuticle stick to push your cuticles back when they are soft (for example, after a bath).
  • Use insect repellent when outdoors.
  • Avoid injuries, including scratches and bruises, to the at-risk arm.

If you have an infection, injury or any of the symptoms listed above, see your health care provider.

Adapted from selected materials [220,222].

Air travel and length of flights don’t appear to increase the risk of lymphedema [26,221]. However, if you have a long flight, it may be helpful to wear a compression sleeve and to massage your arm during the flight [222].

 A note if you are traveling by air

Susan G. Komen® wants to ensure people who have breast cancer are treated with respect and dignity.

When you travel by air, these steps may be helpful:

  • Arrive at the airport earlier than usual, so you have time to go through secondary screening if needed.
  • If you are concerned about going through the body scanner for any reason, request a private pat-down screening.
  • If you choose, or are selected for, a pat-down screening, you may request a private screening away from public areas.
  • If you feel comfortable, tell the Transportation Security Administration (TSA) agent you are undergoing or have had breast cancer treatment. If you prefer to give this information discreetly, the TSA has a notification card you can give to the agent (find this card on the TSA website).
  • If you wear a compression sleeve, you don’t need to remove it, but you may need to be screened with a hand-held metal detector and may need to be patted down.
  • If you feel uncomfortable for any reason, it’s always OK to ask to talk with a TSA supervisor.
  • Pack your medications in carry-ons, rather than in checked luggage.

Learn about TSA screening if you wear a breast prosthesis

Learn about TSA screening if you wear a wig, scarf or other head covering.

If you have concerns about airline security screening, visit the TSA website.

 

Calling attention to lymphedema

Many people don’t know lymphedema is a possible side effect of treatment, but it can be a lifelong concern once it develops.

Try to take steps to reduce your risk and seek care if it does develop. If you have any signs or symptoms of lymphedema, see your health care provider.

The National Lymphedema Network is working to increase awareness of lymphedema.

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Komen Perspectives

Read our perspective on lymphedema.*

Resources

Komen Treatment Assistance Program
Provides financial assistance for lymphedema care and supplies, as well as other treatment expenses.
www.komen.org    

Living Beyond Breast Cancer
Find information on lymphedema.
www.lbbc.org/

Lymphatic Education and Research Network
Find clinical trials and other information on lymphedema. 
www.lymphaticnetwork.org/   

Lymphology Association of North America (LANA)
Find a list of LANA certified physical therapists. 
www.clt-lana.org  

National Cancer Institute—Lymphedema
Find information on lymphedema.
www.cancer.gov  

National Lymphedema Network
Find a support group, physical therapist, financial assistance for compression garments and information on lymphedema. 
www.lymphnet.org

*Please note, the information provided within Komen Perspectives articles is only current as of the date of posting. Therefore, some information may be out of date.