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
- Sunburns
- Consistently carrying heavy loads
- Standing for unusually long periods of time
- Constriction of the area
- Obesity
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.
Related Post: How To Handle Breast Cancer Side Effects After Treatment
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)
- Dehydration
- 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.
Related Post: The Financial Cost Of Cancer
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!
*The information provided on this website is for informational and educational purposes only. It is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Reliance on any information provided by this website is solely at your own risk. The owners, contributors, authors, and publishers of this website are not liable for any losses, injuries, or damages arising from the use of the information on this website.*
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 lymphedema in my legs. I use a pumping system that works quite well. I pump for an hour a day and it helps with the drainage. I enjoyed reading this article.
Thanks Pamela!
I cannot read your posts because your photo covers up most of your comments!
Hi Margaret,
I’m sorry this happening for you! Are you looking at our blog on a phone or desktop? We do need to update our website template which and hope to have this finished shortly.
Warmly,
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.
I had to have brain scan I had breast cancer in right breast took 5 lymph nodes out I had just recently heard about blood pressure should be taken on opposite arm breast doctor never told me now they couldn’t get iv in left arm with contrast so they did it in right arm now I’ve got something else to worry about because it might cause Lymphedema. Not sure how many times since I’ve had blood taken had port during chemo
I was diagnosed with lympedema about 9 months ago. I have had manual drainage which is basically massaging the legs by a physical therapist to move the fluid. I am facing knee replacement surgery, but my BMI is too high. I have a Dr from The Hospital for Special Surgery who will do the replacement, but I am very hesitant because the more you weigh, the higher risk factors you may face. I have already had another Dr who absolutely said that he would never perform surgery on me due to my weight. I am horrified. I can’t seem to lose weight on any diet. I was told that with lympedema you carry extra fluid in the body.
Hello Susan,
I’m sorry to hear of your struggles and hope that your doctors find a way to help you.
Warmly,
Linda
help i need recorces
Hello Dennis,
Can you let me know what kind of resources you need?
Warmly,
Linda
Is this condition only found in cancer patients? My friend has many of these symptoms and has never had any type of cancer. I told him he really needs to have the swelling checked out which started in his leg and is moving to upper extremities. He thought he was just gaining wait or reacting to something he ate. His doctor put him on fluid pills, but that doesn’t seem to be resolving his
Issue.
Hello Paula,
Because we aren’t medical professionals I can’t give medical advise.
Warmly,
Linda
no, it can run in families, or if you had blood clots at sometime in your life. being over weight is just a doctors’ reason to see you again in my opinion. I ‘ve read that if you have this you many need more calcium in your diet, me included, but because of my anti- seizure meds are calcium blockers.
Wish this information had been available back in 2007 or that doctors would have advised me of this. My leg lymphodema can be a combination of Liposuction I had done when I was in my 30s and then the chemo I received in 2006-2007. My legs would swell on and off, but the education was not there. Fast forward to now, 2025 and I’m 65 and have to wear compression socks all the time or my legs feel like the skin is going to tear open.
Wish I had known Liposuction would damage the lymph system too, or I wouldn’t have done it. I did ask them if it would damage anything and they said no. Liars.
We can transplant and regrow just about anything, so why can’t they transplant a lymphatic system onto my legs and remove the damaged ones. Wouldn’t mind one in my left arm since they removed those.
I know science is constantly evolving. Can’t wait until they can regrow our lymph nodes or can transplant some in.