Life after cancer | Aftereffects | Lymphedema

What is lymphedema?

What causes lymphedema?

How is lymphedema diagnosed?

How is lymphedema treated?

What self-help measures help keep lymphedema under control?

How can lymphedema be prevented?

I have a high fever and severe pain in my leg; I also have lymphedema. If this is cellulitis, how is it treated and prevented?

What is lymphedema?

Lymphedema is accumulation of lymphatic fluid which causes swelling in tissues, most often in the extremities. Development of lymphedema is usually the result of removal of, or damage to, lymph vessels or nodes. There are three stages of lymphedema, from mild to severe. The first stage is characterized by "pitting"; in the second stage the skin does not bounce back when pressed. The third and final stage, considered irreversible, is known as "lymphostatic elephantiasis" and the limb(s) is hard and very swollen, and usually painful.

Early detection and treatment is essential to lymphedema control, as lymphangitis (infection) can result from improper care of the affected areas. Untreated lymphedema can also develop into a rare form of lymphatic cancer called lymphangiosarcoma.

The National Lymphedema Network, the source of this information, provides an overview of lymphedema: what it is, its causes and risks, symptoms, stages, precautions and treatments. http://www.lymphnet.org/whatis.html

What causes lymphedema?

Trenna, Pennsylvania, USA: For my endometrial cancer, I had a radical hysterectomy and radiation to which I attribute my lymphedema. Lymphedema can be caused by the removal of lymph nodes (lymphadenectomy) or by radiation treatments, leaving a deficiency in the lymph "chain" which sweeps the lymph (liquid) upwards.

How is lymphedema diagnosed?

Florence D., Pennsylvania, USA: My lymphedema was diagnosed by a physical rehabilitation physician following my hysterectomy and radiation. My lower torso remained swollen after I recuperated from my surgery. Then, I gained ten pounds in one month from the fluid building up.

How is lymphedema treated?

Florence D., Pennsylvania, USA: Lymphedema requires attention. My treatments included: manual lymph drainage (a massage technique) to create new pathways for lymph circulation, bandaging, fitting for compression garments, diaphragmatic breathing, and exercises to strengthen my abdomen. I received major relief from myofascial-release (a massage therapy technique) which broke up painful scar tissue or adhesions.

Now, after having completed 24 lymphedema treatments at a cancer center, I can walk easier, can play tennis and enjoy all the activities I knew before cancer.

What self-help measures help keep lymphedema under control?

Florence D., Pennsylvania, USA: My condition will be life-long. To help keep it under control, I sleep with my legs elevated, wear compression hosiery, and drink almost a gallon of water daily to dilute the excess protein in my lymph system. My diet is rich in vegetables and fruits, and scarce in animal fats and dairy. These recommendations can be found in the Oncolink article on management of lymphedema. http://www.oncolink.com/templates/oncotips/article.cfm?c=1&s=4&ss=9&id=32

Trenna, Pennsylvania, USA: I am more comfortable after I walk in the deep end of the pool, or when I bike, because exercise (contracting the muscles) helps. Immersion has long been known to do nice things for edema - the water pressing in on the tissues acts like a non-chemical diuretic. In the deep end of the pool there is more pressure from the water on the skin surface and within the body. Here are a few more suggestions you can do on your own to help alleviate some of the swelling:

Elevation means "higher than your HEART", so just putting your feet UP doesn't really do it. Lie down and elevate your feet on the arm of the couch or even the back of the couch ... or put three or four pillows under your knees and lower legs in bed.

Think of the accumulated fluid as "liquid in your cells", a river that needs help to flow. Use your whole palm and all your fingertips to sweep upward smoothly - FIRST in your thighs, front, back and sides to get the river open upstream. Sweep slowly and fairly deeply. Don't cause pain. Then do your calves - front, back and sides. Don't forget your feet - sweep the stream from the top of your feet. Now that the river is open - sweep from the bottom to the top of your entire leg. A soda pop bottle with ridges works well as a foot roller. Put your foot on top of the bottle and roll it. This massages all the acupressure points and may cause tenderness here and there. Focus on any tender places you find.

Of course, see your doctor first to rule out any serious problem. If the doctor diagnoses full blown lymphedema, he/she should refer you to a physical therapist who specializes in Manual Lymph Drainage.

Piret T., Estonia: I elevate my leg for at least fifteen minutes every two hours. I also do MLD (manual lymph drainage - very light massage to help the flow) and some leg exercises, plus lots of swimming or at least standing and reading in pool (water pressure helps a lot). I also use compression stockings for when I need to be on my feet daily (I hate these, but they do their job). I have not done the bandaging yet and I go to one therapist, who does acupuncture with laser light on my one leg that is affected by lymphedema. I feel this really makes it better too.

Sue D., Pennsylvania, USA: I've had lymphedema even without having lymph nodes removed. Mine does come and go. It will be worse in the summer, so I can expect to be able to have my left ankle, foot, and shin to swell enough that I can sink my thumb into the kind of doughy skin and put a pretty good dent into it. On my worst days I'll have trouble getting my shoe on. But those days are few and far between. My doctors have not been that concerned about it after doing a baseline doppler sonogram to make sure there was no blocked blood vessels.

The remedies I use are: elevate your legs (doesn't help mine, frankly), use support hose (does help some), walk a lot (helps quite a bit actually), take a diuretic (even a very low dose has helped me quite a bit).

Danger signs they told me to look for: pain in the swollen leg could mean an embolism (needs emergency care); fluid in both legs could mean congestive heart failure.

Be sure to mention the swelling to your doctors so they can rule out anything more serious.

How can lymphedema be prevented?

Oncolink, the web presence of the University of Pennsylvania Cancer Center, presents a document titled Preventing Lymphedema
http://www.oncolink.com/templates/oncotips/article.cfm?c=1&s=4&ss=9&id=62

I have a high fever and severe pain in my leg; I also have lymphedema. If this is cellulitis, how is it treated and prevented?

Piret T., Estonia: I have lymphedema and recently developed cellulitis. Symptoms are pain in one or both legs, a high fever, and irregular red blotches that may develop on the affected limb. Cellulitis is lymph inflammation and you should go to a doctor or Emergency Room quickly, where you will be given antibiotics. If this is not treated, you might have complications more difficult to treat, resulting in more swelling and fibrotic (hard) tissue in the affected leg(s). You may need a lot of antibiotics, and may have to elevate your leg(s) almost constantly.

Katie A., California, USA: One of the main functions of the lymphatic system is fighting infection, and when that is disturbed by surgery, radiation or other treatment, you are much more prone to infection that can turn into something nasty like cellulitis. When you have lymphedema, you have to be extremely careful of your legs/feet. It's a good idea is to avoid anything that can cause injury to them including going barefooted, insect bites, cat scratches, shaving with razors, working in the dirt etc.

In fact, women who have had breast cancer surgery are advised never to get needle sticks in whichever arm is on the surgery side, even in the absence of lymphedema! So keep your legs and feet in good condition and at the first sign of infection, call your doctor.