If you’ve never heard of lymphedema, you are not alone. The National Cancer Institute calls this condition “one of the most poorly understood, relatively underestimated, and least researched complications of cancer or its treatment.” Approximately 20-30% of breast cancer patients may get lymphedema so arm yourself with information so you can stay safe, healthy, and aware.
What is lymphedema?
Lymphedema is a swelling of the tissues caused by an accumulation of fluid that is normally drained through the body’s lymphatic system. This can show up as swollen arms or legs, and in some cases, it can occur in the neck, armpits, abdomen, and even groin area.
What causes lymphedema?
When the drainage of lymph fluid is blocked, lymphedema may occur. Because it is caused by structural damage to the lymph system, lymphedema is considered a chronic condition. Some cancer treatments that remove or damage lymph nodes can also cause lymphedema, and it also can be induced or exacerbated by anything that puts undue pressure on the lymph nodes or damages the vessels, including:
- Air travel or any changes in air pressure
- Trauma or injury like a sprain, fracture, wound, or infection to the skin
- Exposure to excessive heat or cold
- Consistently carrying heavy loads
- Standing for unusually long periods of time
- Constriction of the area
Cancer treatments, such as lumpectomies, chemotherapy, radiation, and lymph node removal, are some of the most common causes of lymphedema, however, not everyone who goes through treatment will get this condition. Keep up on clinical exams by your healthcare provider and see your doctor immediately if you notice swelling or any infections.
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What are the symptoms of lymphedema?
The most common symptom is swelling, which may develop slowly or come on suddenly. Other signs to look out for are:
- A feeling of heaviness or tightness in the fingers, toes, legs, arms, neck, groin, or abdomen
- Tightness in the joints
- Restricted range of motion
- Red or puffy skin
- A feeling of burning or itching
- Hardening and thickening of the skin (fibrosis)
- Your jewelry and clothing are tighter than usual
These signs can be mild to severe. In some cases, lymphedema may show up months or years after surgery and treatment.
What are the four stages of lymphedema?
It’s important to understand where you are in these stages so that you can get the right treatment for your particular symptoms. Early action helps to avoid the severity of symptoms.
Stage 0: Latency Stage
Swelling is not evident despite impaired lymph transport, and there may be a feeling of heaviness in the area and tightness in the skin.
Stage 1: Mild Stage
There may be some puffiness in the affected area due to accumulation of fluid that’s relatively high in protein content. Pain and swelling possibly subside with limb elevation. There may be some pitting edema – marks left in the skin after applying pressure.
Stage 2: Moderate Stage
Limb elevation alone rarely reduces swelling. Pitting may or may not occur as tissue fibrosis – thickening or scarring – develops. This is usually the stage where increased pain and fatigue happen.
Stage 3: Lymphostatic Elephantiasis
Discoloration, fat deposits, and overgrowths begin to develop. There is extensive swelling and thickening of the skin. Pain can be moderate to severe, and it may seem as if there are tumors on affected limbs
What causes lymphedema to flare up?
- Injury to the area (scrapes, sprains, etc.)
- Infections on the skin around the area with lymphedema
- Exposure to excessive heat or cold
- Overworking the limb(s)
- Severe constriction of the area
Related: How To Deal With Fatigue During Breast Cancer Treatment
What should you avoid with lymphedema?
- Punctures, including injections, blood tests, and tattoos in the affected area
- Manicures or pedicures, especially if your condition is on your arms or legs
- Heavy lifting
- Tight clothes, shoes, and jewelry
Can you get rid of lymphedema?
While there is no current cure for lymphedema, there are many things that you can do to reduce your risk, symptoms, and pain:
- Keep your weight in check. Obesity puts pressure on lymph nodes and vessels and the extra weight and excess pressure can negatively affect lymphatic drainage.
- Move around. Low-impact exercise, like walking, swimming, cycling, rowing, and yoga, can help to drain your lymphatic system and therefore reduce lymphedema symptoms. Your leg muscles pump up lymphatic circulation and inactivity can cause swelling in your legs so add exercise to your daily routine.
- Wear compression garments like socks, sleeves, or wraps. These create pressure to move fluid from tissues into circulation.
- Elevate yourself. Keep affected areas of your body raised to reduce swelling.
Related: How To Handle Breast Cancer Side Effects After Treatment
Does having lymphedema qualify you for disability?
Sometimes. If your case is moderate or severe, you may qualify for disability and possibly receive monthly benefits. Not sure about your chances of qualification? Talk to your doctor about your condition and read more about how you can potentially access benefits.
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If you develop lymphedema, know that you are not alone. It is natural to feel anxious or stressed about any diagnosis so seek out help and remember that you can manage your symptoms by taking action. Talk to specialists, get informed about treatment options, contact support groups and learn how to help yourself and thrive emotionally despite any condition!
My name is Felicia L Jennings thank you for the information about lymphedema. Some stuff I knew and some I’m just finding out. I had a diagnosis of breast cancer on August 8,2016 and I am currently still on oral Hormonal chemotherapy medication. I just recently developed lymphedema about 2 years ago. Thank you again for the article
You’re most welcome! I’ve been living with lymphedema for many years and it can be painful and uncomfortable. Physical therapy and compression garments have been a huge help in managing. I wish you the best, Linda
I have had breast cancer twice, the last time in 2011. I am 92 years old and have developed lymphedema recently. The suggestions described above have been helping the swelling go down in my legs, so I am strict about wearing compression socks. It takes a longer time for small punctures to my skin to heal; therefore, I am very careful about such things as cat scratches and any injuries that cause infection. I also exercise daily, and include massage of lymph system areas. These routines do help, so give them a try.
My feet and lower leg have been swelling uncontrollably for over a year. The doctor prescribed Lasix, wniichj shot up my creatinine level. I have had my kidneys checked and have gone through heart .All ok. This looks like what I have. How do I get a diagnosis? What tests are given and what kind of specialist treats this disease?
Hi Barbara, I would look for a lymphedema specialist in your area. I had physical therapy and they taught me ways to control it.
Thank you. I need more information because my doctor said I have some lipidemia but he has not given me any helps yet. Liberty
Ask him if he could recommend a specialist, mine helped me a great deal with managing it.