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 throughout 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 can be affected by breast cancer treatment.

The following is a 3D interactive model showing lymphedema in the arm.

What is lymphedema?

During breast cancer surgery (mastectomy or lumpectomy), some of the lymph nodes in your underarm (axillary lymph nodes) may be removed and checked for cancer.

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

Lymphedema occurs when lymph fluid builds up in your arm, causing it to swell (edema). Lymphedema can also occur in your hand, fingers, chest/breast or back.

The swelling may be so slight it’s barely seen or felt. Or it may be so great your arm or other affected area grows very large. Having one arm larger than the other (or swelling in another area), even if the change is small, can be distressing.

In severe cases, lymphedema can cause pain and limit movement.

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

Who gets lymphedema?

Lymphedema is related to axillary lymph node surgery (surgery to remove lymph nodes in the underarm area) and radiation therapy to the axillary lymph node area. However, it’s not clear why some people get lymphedema and others don’t.

Some factors that increase the risk of lymphedema include [3,16-24,222]:

  • 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

Breast reconstruction and lymphedema

Whether or not a woman has breast reconstruction after a mastectomy does not appear to affect her risk of lymphedema [25-28]. The type of breast reconstruction a woman chooses also does not appear to affect risk [25-28].

How often does lymphedema occur?

Today, most people treated for breast cancer don’t get lymphedema because modern surgery removes fewer lymph nodes in the underarm area (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. 

Sentinel node biopsy versus axillary dissection

In the past, people treated for breast cancer 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 [3,16,20-24].

Women who have sentinel node biopsy are about 3-4 times less likely to develop lymphedema than those who have an axillary dissection [20,29].

One year after breast surgery [18,30-31]:

  • Fewer than 5% of women who have sentinel node biopsy develop lymphedema
  • 10%-20% of women who have 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 [3,23-24].

In cases when lymphedema occurs right after surgery, it usually only lasts a short period of time and then goes away.

Signs and symptoms of lymphedema

Signs and symptoms of lymphedema include [16,23]:

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

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

Most cases of lymphedema can be managed, but the signs and symptoms don’t usually go away completely. When caught early, treatment can reduce some signs and symptoms and stop them from getting worse.

Lymphedema 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 [3].

If you’re at high risk of lymphedema, the National Comprehensive Cancer Network (NCCN) recommends you get screened for lymphedema regularly [3]. Your health care provider should check your at-risk arm(s) and talk with you about any signs and symptoms of lymphedema [3]. If available, your provider should also screen using bioimpedance spectroscopy (which measures fluid in the tissues) [3].

Other screening methods of the at-risk arm(s) include taking pictures, lymphoscintigraphy (special imaging of the lymph nodes) and perometry (special imaging of the arm) [16,23-24,32-34].

Some studies show monitoring for lymphedema within the first 3 months after surgery may lead to earlier diagnosis [32,34]. 

Treatment of lymphedema

Treatment for lymphedema can reduce pain and swelling in the affected arm. It can also improve movement. However, for many, lymphedema will not completely go away.

Standard lymphedema treatment includes complex decongestive therapy. This approach aims to decrease swelling and infection through a combination of [16,23-24]:

  • 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 [19]. After that, you continue the therapy on your own [19].

Other treatments may include [3,19,23,36-37]:

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

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

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

Lymphatic surgery to treat lymphedema

Treatment for lymphedema may involve lymphatic surgery including lymphovenous bypass or lymph node transfer surgical procedures [19,38-40]. These procedures are under study.

Lymphatic surgery is performed by trained plastic surgeons using microsurgery and supermicrosurgery techniques.

Exercise and lymphedema

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 [24,41-43]. (It’s best to avoid strenuous exercise right after breast surgery though.)

Studies also show moderate weight-lifting in a supervised setting can reduce symptoms of lymphedema in breast cancer survivors, as well as improve body image, sexuality and physical strength [44-47].

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.

Reducing the risk of lymphedema

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

  • Maintain a healthy weight
  • Be aware lymphedema is a possible side effect of breast cancer treatment
  • Seek care right away 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 [23]. 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’ve 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 housework or gardening.
  • Keep skin clean and well-moisturized.
  • Avoid sunburn and excess heat from saunas, hot baths, tanning and other sources.
  • Don’t cut your nail cuticles. Use a cuticle stick to push your cuticles back when they’re 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 [23-24].

Air travel and the length of flights don’t appear to increase the risk of lymphedema [3,17]. Some people may be more comfortable wearing a compression sleeve and may consider massaging their arm during a long flight though, if they feel it helps.

A note if you are traveling by air

Susan G. Komen® wants to make sure 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’re 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.

Lymphatic surgery to reduce the risk of lymphedema

Lymphatic surgery is an emerging field. The goal of lymphatic surgery is to prevent or treat lymphedema.

Lymphatic surgery is performed by trained plastic surgeons using microsurgery and supermicrosurgery techniques.

Preventive lymphatic surgery involves connecting lymphatic channels to nearby veins. This procedure is called lymphatic microsurgical preventing healing approach (LYMPHA) [48]. It may be done at the time of axillary lymph node dissection in people at high risk of lymphedema.

Calling attention to lymphedema

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

Try to take steps to reduce your risk of lymphedema. 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.

Susan G. Komen Supports the Lymphedema Treatment Act

The Lymphedema Treatment Act, legislation long supported by Susan G. Komen, was passed by the U.S. Congress in December of 2022 with overwhelming support. The Lymphedema Treatment Act created a new benefit category in Medicare for custom-fitted lymphedema compression garments and other approved items prescribed by a doctor or other health care provider starting in 2024.

This is a huge step in reducing the financial burden of breast cancer on patients. Passage of the Lymphedema Treatment Act comes after years of advocacy from our community and many others. Without this coverage, people in need of this treatment may have high out-of-pocket costs to treat their lymphedema. With the law passed, Komen is continuing to make sure the Lymphedema Treatment Act is implemented in a way that best supports patient needs.

Thank you to all Komen advocates who helped this legislation become law!

quote_icon

Komen Perspectives

Read our perspective on lymphedema.*

Learn More

Komen Financial Assistance Program

Susan G. Komen® created the Komen Financial Assistance Program to help those struggling with the costs of breast cancer treatment by providing financial assistance to eligible individuals.

Funding is available for eligible individuals undergoing breast cancer treatment at any stage or living with metastatic breast cancer (stage 4).

To learn more about this program and other helpful resources, call the Komen Breast Care Helpline at 1-877 GO KOMEN (1-877-465-6636) or email helpline@komen.org.

Se habla español.

You’re not alone

If you’re living with lymphedema, it’s normal to feel emotional distress. Physical changes can impact your day-to-day life and emotional well-being. There are other people with similar experiences who can relate to your own.

Sharing experiences and advice with others living with lymphedema may help. You can do this in a support group or by connecting one-on-one with another breast cancer survivor.

You can also talk with your health care providers about how you’re coping. They care about your overall well-being and can help you find ways to improve it. In addition to suggesting a support group, they may connect you to another member of your health care team, such as a social worker or patient navigator, for support. They may also refer you to a counselor.

Our Support section has a list of resources to help find local and online support groups and other resources.

Learn more about social support and support groups.

Learn about healthy ways to cope with stress.

Lymphedema resources

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, a physical therapist, information on lymphedema and financial assistance for compression garments.
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.

Updated 02/22/24

TOOLS & RESOURCES

PDF

Fact Sheet

PDF

Questions to Ask Your Doctor