The swelling comes from an accumulation of lymph, a fluid the flows throughout your body that contains immune cells and proteins.
Lymphedema occurs when lymph nodes or lymph vessels are damaged or blocked. This is a common complication of breast surgery and radiation, and can also be due to the tumor itself.
Symptoms
Sometimes lymphedema is temporary, occurring just after surgery and then resolving. Often, however, it’s a chronic condition.
It may wax and wane over the course of your life, even after your breast cancer is cured. In rare cases, lymphedema may occur decades after breast-cancer surgery.
Lymphedema comes in four stages, each of which varies in terms of symptoms:
Stage 1: Lymph has an abnormal flow but no signs or symptoms are evident. Stage 2: Fluid accumulates, swelling is noticeable and goes away with elevation. Poking the area may leave a dent. Stage 3: Swelling is chronic. It doesn’t go away with elevation, poking no longer leaves a dent, and the skin begins to thicken and scar. Stage 4: The arm is large and deformed (elephantiasis) and the skin has extensive thickening, scarring, and lumpy growths.
Proper treatment can keep it from advancing, so it’s important to catch lymphedema early, preferably in stage 2. Signs and symptoms to watch for in your arm include:
Visible swelling or your clothes and jewelry becoming tightA feeling of heaviness or fullnessA tight feeling in the skinAn indentation when your skin is pressedWeakness and lost flexibilityAching, itching, or painRedness of the skin
What Happens If Lymphedema Goes Untreated?
If lymphedema isn’t well managed, it can lead to complications that shorten your life expectancy.
Lymphangiosarcoma
The most serious one is a rare and deadly type of cancer called lymphangiosarcoma. It results from prolonged, poorly managed lymphedema.
Lymphangiosarcoma symptoms include:
Purple discoloration of the skinTender nodule (bump) in the skin of the armNodule that progresses to an open, crusty sore and eventually causes tissue death (necrosis)
The five-year survival rate for someone with lymphangiosarcoma is about 5%.
Cellulitis
Cellulitis is a skin infection. Trapped fluids are an ideal place for germs to flourish, so it’s common in lymphedema.
Symptoms to watch for include:
PainRednessSkin that’s warm to the touch
Cellulitis is typically treated with antibiotics, wound care, rest, and elevation.
Sepsis
Sepsis is a blood infection. It can result from untreated cellulitis. Sepsis is potentially fatal and is always a medical emergency.
Symptoms of sepsis include:
Rapid breathing and shortness of breathFast heart rateConfusions or disorientationExtreme painFever and shiveringClamminess or sweatiness
Get immediate medical attention if you develop these symptoms.
Causes
Lymphedema occurs when the flow of lymphatic fluid through lymph vessels or nodes becomes impaired. The fluid can back up and enter the nearby soft tissue, causing the characteristic swelling of lymphedema.
Breast cancer can result in lymphedema when:
Breast cancer surgery damages or cuts lymph vessels or lymph nodes in the chest wall and armpitSurgical scar tissue blocks the flow of lymph through lymph vesselsRadiation-induced scarring blocks or damages lymph nodes and vesselsCancer cells migrate to lymph nodes, causing the nodes to enlarge or become blockedA breast mass or tumor presses on lymph nodes or vessels, obstructing lymph flow
Risk Factors
Certain treatments or other factors can raise your risk of developing lymphedema. Treatment-related risk factors include:
A surgery called lymph node dissection Post-surgical radiation therapy or chemotherapy Infection at the surgical site Mastectomy
Having immediate breast reconstruction may lower your lymphedema risk.
Other risk factors are:
Having advanced breast cancerHaving obesityHistory of lymphangitis (infection and inflammation of the lymphatic system)Older ageRheumatoid arthritis or psoriatic arthritis
Because breast cancer can spread to nearby lymph nodes, it’s not uncommon for a breast cancer evaluation to include a lymph node biopsy. Biopsy or removal of lymph nodes in the chest or armpit increases the chances of developing lymphedema as well.
Diagnosis
Lymphedema is diagnosed based on your physical examination and may involve some diagnostic testing as well. The arm swelling is usually evident, but it can be subtle.
The diameter of the affected and unaffected arms can be compared with a tape measure, and these values may be recorded so your healthcare provider can see if you have any changes (improvement or worsening) over time. Most healthcare providers recommend screening for breast cancer-related lymphedema both during and after treatment.
If you have breast cancer, your healthcare providers might not do any additional testing to determine the cause of your lymphedema because breast cancer is often associated with this complication.
However, there are times when your medical team may be concerned that lymphedema is a sign of an infection or cancer extension. Congestive heart failure can also cause arm swelling, as can blood clots in the arm. Your medical team may need to rule out these health problems, and diagnostic tests can help clarify the cause of your arm swelling.
Imaging tests such as computed tomography (CT), ultrasound, or magnetic resonance imaging (MRI) scans can often identify masses or areas of infection.
Lymphatic scintigraphy involves the injection of a radioactive dye, followed by recorded images of the dye as it moves through the lymphatic system. This test can help identify areas of slow lymphatic flow or blockage.
How to Find a Lymphedema Specialist
If your cancer care team suspects or discovers lymphedema, they’ll likely refer you to a lymphedema therapist. That’s typically a physical therapist with special training in treating this condition.
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One of your doctors may oversee your lymphedema treatment or they may send you to a lymphologist. They’re often plastic and reconstructive surgeons with expertise in treating lymphoma and other conditions of the lymphatic system.
Your care team may have recommendations for you. To research these specialists on your own, you can start with these databases:
Academy of Lymphatic Studies Klose Training Lymphedema Certification Lymphology Association of North America Norton School of Lymphatic Therapy National Lymphedema Network
You’ll also want to see who and what your insurance covers. Online reviews, friends, family, and support groups can also be good resources.
Treatment
Symptoms of lymphedema, such as swelling and pain, can often be managed. The lymph nodes and lymphatic vessels cannot be repaired, but they may heal on their own.
Sometimes, physical pressure caused by a tumor can be relieved with surgery or radiation, but these treatments may worsen lymphedema and the main objective of these techniques is treating the tumor, not the lymphedema.
Lymphedema treatments include:
Exercise: Special kinds of exercises that gently contract muscles can aid in pumping lymph fluid out of the swollen limb. Massage: Specially trained physical or massage therapists can provide manual lymph drainage with a series of gentle massage maneuvers that direct lymph flow out of the affected limb. However, these treatments are not safe for everyone, and you cannot undergo this type of massage if you have metastatic cancer, infections, blood clots, or congestive heart failure. Compression: Compression can also direct the flow of lymph out of the affected arm. Compression can be provided in a number of ways, including elastic bandaging, use of a special compression sleeve or stocking, or the use of an air-driven (pneumatic) pump.
Lymphedema can’t be cured and you should expect to have recurrences. Keeping it managed prevents it from advancing and having a bigger impact on your quality of life or leading to serious complications.
Coping
When you have lymphedema, it’s important to avoid anything that might worsen your condition or cause complications. You will need to make a few adjustments to your daily life to avoid exacerbating your lymphedema.
Tips for coping include:
Continue to use your arm as normally as possible, as muscle contractions help pump fluid out of your arm. Keep your arm and hand clean and well-moisturized to avoid cracking from dryness, which increases the risk of infection. While reading, watching TV, or otherwise at rest, keep your arm elevated above the level of your heart, which helps decrease the swelling. Avoid exposure to heat (for example, don’t use hot tubs or saunas). Wear gloves when you garden, clean your house, or do yard work to avoid cuts and resulting infections. Be very careful when using sharp instruments in the kitchen or while doing craft projects to avoid an injury. Avoid tight jewelry or clothing, other than prescribed compression garments. Avoid blood draws, shots, or intravenous (IV) placements in the affected arm. Ask to have your blood pressure taken in your unaffected arm. Carry your purse on your unaffected arm. Avoid lifting heavy things, including children. Wear long sleeves outside and consider using bug spray to avoid insect bites.
Air Travel
While some breast cancer survivors with lymphedema avoid air travel, researchers have found that air travel does not increase the risk developing lymphedema or worsen the condition.
Airplane travel can increase the risk of blood clots, and this risk is higher if you have or have had cancer. Lymphedema may also increase the risk of blood clots, so be sure to ask your healthcare provider if you should take any special precautions.
A Word From Verywell
Lymphedema itself is not necessarily dangerous, but it can be uncomfortable, and there are a few complications associated with the condition. In some instances, lymphedema is the first sign that cancer is spreading, so it is important to let your healthcare provider know if you develop arm swelling for the first time or if your lymphedema worsens.
