The Risk of Lymphedema - Who Gets This?

Cancer patients are particularly susceptible to developing lymphedema. Women with breast cancer can develop lymphedema in their arms and trunk. Prostate cancer patients who have had a radical prostatectomy and/or radiation can develop lymphedema in the genital area and the legs.

Cure magazine says, "approximately one in five patients that require the removal or destruction of lymph nodes as a result of cancer treatments will develop lymphedema." Prostate cancer patients who have surgery to remove the prostate often have the lymph nodes in the pelvic region removed for biopsy.

Sadly, lymphedema is a chronic and incurable complication/side effect of cancer treatments.  

Lymphedema Diagnosis - is it lymphedema?

OK, so my leg (or arm, or trunk or genitals) are swollen. What do I do now? For the leg, a possible complication/confounding event is the possiblity of a blood clot(DVT). It also may be an indication of progression of your cancer.  You can also have a blood clot(s), disease progression and lymphedema.  An ultrasound scan of the leg can detect the presence of blood clots in which case anti-coagulation is usually prescribed.

Renal, liver and heart disease also have to be ruled out.

The warning signs for lymphedema are, a heavy or achy feeling in an arm or leg; a tight sensation in a hand or foot; noticeable swelling in an arm, leg, hand or foot; decreased flexibility; shirt sleeves or pant legs feel tight; sudden increase in weight, not associated with overeating.  Another warning sign is called pitting. Pitting is observed in earlier stages and occurs when a finger pressed against the skin indents and holds the indentation.

The National Lymphedema Network's page has an excellent explanation of lymphedema. See: http://www.lymphnet.org/whatis.html and this covers what it is, what the causes are, symptoms and more.

Explanation of Lymphedema - Some Nuts and Bolts

Diagrams of peripheral and central lymph transport are viewable as a PDF document (one page). Click here to download.

The heart - arteries - veins form both an outflow and return system for blood, carrying oxygen to tissues and return it to the heart/lungs for reoygenation.  The lymphatic system acts as just a return path, picking up the excess protein and water which leak from blood vessels in small amounts.  The lymphatics also pick up some substances made in the tissues they drain, and any foreign substances which enter them.

Lymph ducts connect lymph nodes. The movement of the lymph fluid depends on the pumping action of adjacent muscles and the contractions of the walls of the larger lymph ducts. There are valves inside the ducts which aid the pumping by preventing back flow of fluid. Eventually, the lymphatic system drains into the subclavian vein(i.e., just below the 'collar' bone).  So fluid from the lower leg must fight gravity and end up in the upper chest.

The 'normal' flow described above works amazingly well, considering its complexity. However, if the lymphatic system is damaged (e.g. surgery or removal) or blocked (advancing cancer or other means), the protein continues to build up in the tissues instead of draining away. The excess protein leads to excess fluid and the tissues swell. Furthermore, the swelling results in less oxygenation of the tissues, interferes with their normal functioning and as a result they heal more slowly than normal.

You might ask, can anything worse happen than swelling. The answer is yes -- in the form of an infection.  The tissues swollen by lymphedema have a lowered immune response, have lower oxygenation and a high protein content -- all of which increase your risk of infection.

Lymphedema Treatments

The usual treatment is to initiate "Complex Decongestive Therapy". This is a fancy description for manual lymph pathway or system massage (a very gentle massage - also known as MLD or manual lymph drainage) plus bandaging (a real art) plus education plus fitting of special garments.

MLD helps move lymph fluid along and boosts the activity of intact lymph nodes. It is very gentle, involves mostly only the surface or near surface of the skin and moves fluid away from the affected area(s) toward the remaining lymph nodes.  MLD does not involve deep muscle tissue.

If you are having trouble convincing your medical practitioner that MLD is a real treatment, refer them to WA Weiger et al, Advising Patients who Seek Complementary and Alternative Medical Therapies for Cancer, Ann Intern Med. 2002;137:889-903. Table 3 on page 892 indicates that this is a proven technique via at least one properly designed randomized, controlled trial. A 2nd trial was quasi-randomized with similar results.

Excercise can be beneficial also - specifically range-of-motion exercises(with the approval of your treating physician). Resistance training might also be OK, even if you have lymphedema - no systematic studies have been made so far, but one small study indicates no increase in risk for new or worsening lymphedema(in breast cancer patients). (see CA A Cancer Journal for Clinicians, September/October 2003, vol. 53, no. 5, pp. 268-291, available on-line at http://CAonline.AmCancerSoc.org; the title is "Nutrition and Physical Activity During and After Cancer Treatment: An ACS guide for Informed Choices by JK Brown et al.).

In the case of advancing disease, chemotherapy and/or radiation therapy may help by shrinking the tumors in the lymph system (nodes).

In the case of swelling that is partly due to a blood clot in the leg, in time the clot will be dissolved (coumadin will keep new clots from being formed.)  The venous valves are usually non-functional in the region of the clots, however and there will still be a tendency to accumulate fluid in the lower leg.

Skin care. Clean cuts with soap and water. Apply an antibacterial ointment to any cuts or breaks in this skin. In general, avoid scratches, sunburn, punctures or other injuries. Following cleaning with a mild soap, apply a skin moisturizer to prevent dryness and prevent the skin from cracking.

Diuretics. These may help some in the short term as they remove excess fluid from the body via urination. They do not remove the excess protein deposits found in lymphedema and there is evidence that long-term use can be harmful by leading to connective tissue fibrosis.

What Does Having Lymphedema Feel Like?
 

Besides the disfigurement due to the swelling, the use of an arm or leg can be difficult. A swollen leg can be a challenge to move, for example. It is possible for the swollen tissues to press on nerves causing pain. Genital edema can limit mobility and make use of the penis for urination difficult (and any other use for that matter).  Scrotums can contain enormous amounts of fluid as can legs!  Another way of describing how it feels is to imagine a well stuffed sausage straining against its casing. Your leg or arm can have a similar appearance.

The Dangers

Swelling: The most obvious concern is the swelling of the limbs and possibly elsewhere in the body which can lead to enlargements up to 3 times their normal size. Pain, huge skin folds and even elephantiasis (bulbous swelling) can follow.

Infection - cellulitis: A very serious danger/risk is the development of cellulitis. The fluid that is in the tissues is protein-rich. It makes a very fertile ground for infections. Cellulitis is a bacterial infection of your skin. The bacteria enter through cracks or breaks in our skin. If it speads to your lymph nodes and bloodstream, cellulitis can be life-threatening requiring hospitalization and I-V antibiotics. Be alert for skin that is red, swollen, tender and warm.  There may be a fever. The shins and ankles are an area to keep a careful eye on. Cellulitis can produce signs and symptoms similar to a DVT(deep venous thrombosis).

Infection - lymphangitis: infection of the lymphatic vessels or system.

Both cellulitis and lymphagitis can lead to greater blood flow and a buildup of lymph.

Garments and Stuff to Keep Lymphedema in Check
 

The primary objective is to prevent your lymphedema from getting worse and reverse the swelling and restore your tissues to normal. Perhaps an even greater objective is to provide you with garments that are comfortable to wear while controlling your lymphedema. This is not an easy task if the swelling has been allowed to exist for a long time. Selecting the right compression garments can provide comfort for both daytime and nighttime use.

General Comments/Suggestions

If the lymphedema is fibrotic, physical therapists may make a special pad with foam chips inside that you place between a compressive garment and your skin. This is called a chip pad and it can help reduce the fibrotic areas.  Chip pads are an adjunct to MLD.

For the abdomen/chest, physical therapists may also outfit you with a tubie garment (like a giant stretchy tube with added shoulder straps); this squeezes the abdomen/chest nicely.  Sometimes a skin tight, but stretchy tank top can be used for this purpose.  You will have to experiment with this.

Specialized, custom designed garments, primarily for wear at night are available from manufacturer's such as Solaris, Inc.  These can continue your daytime compression on the affected part of your body, but in a comfortable manner.

Genital Area Suggestions

Wear a pair of bicycle shorts with an extra pad in the crotch, pulled up right against the crotch/scrotum/penis. This may help to control the genital edema. Remember, that it takes a while for the fluid to be moved elsewhere and don't wear the bicycle shorts all the time - take a day off. The suggestion for using bicycle shorts in this way, comes from a physical therapist specializing in lymphedema.

OR, try some other combinations of compressive boxer shorts and an athletic supporter. Wear the skin tight boxer shorts(not too tight, however) and the athletic supporter over that. At some point in the future, a custom designed genital lymphedema garment may become available (your physical therapist may have knowledge of this) from Solaris. 

Lower Leg Lymphedema Suggestions

There are full leg length compression stockings as well as a lower leg only variety.  These are worn typically when you are awake and out of bed.  Several manufacturers of compression stockings are listed below. They are usually obtained through a medical supply store as a prescription item.

Compression stockings come in various amounts of compression expressed in terms of millimeters of mercury: A class I stocking has 20-30 mmHg, class II 30-40 mmHg and class 3 40-50 mmHg. There are various ways of ensuring that the stockings stay up.  A border at the top can contain a pattern of silicon dots that are effective in holding the stocking in place.

You can buy off the shelf stockings which may fit you fine.  Custom stockings are also available and may be your only option, but they are considerably more expensive than the off the shelf variety.

Having a compression sock on only the lower leg probably is a bad idea. If you have whole leg swelling, then you need a full leg length compression stocking with sufficient compressive strength to hold the swelling down over the whole leg with the highest compression in the calf/ankle area and a less amount for the thigh. This aids fluid flow out of the leg.

Sequential Pumping Garments

One unit I am familiar with is called the Lympha Press.  These are expensive, but seem to be of help in reducing fibrosis. 

Low Level Laser Units

The FDA has recently approved a laser made by RianCorp for treating postmastectomy lymphedema.  The Unit is called the LTU-904. 

Author: Howard Hansen 
Date: Written 2 February 2004; updated 7 November 2007

Note: The author is not a medical doctor and cannot render medical advice. As a prostate cancer patient, this was written in an attempt to understand lymphedema and how it affects me. I make no claims that this review is definitive, complete or authoritative and I request any contributions to, or clarification of the subject which might contribute to the issue or inquiry. In conjunction with a medical team, every cancer patient must make their own decisions regarding treatment options. Your own medical team's directions should be carefully followed.

REFERENCES FOR FURTHER INFORMATION
 

Web sites with lymphedema information

The Cancer Supportive Care website has an excellent section on lymphedema.
http://www.cancersupportivecare.com/lymphedema.html

This site from the United Kingdom also covers lymphedema.

http://www.cancerbacup.org.uk/info/lymphoedema.htm

The NCI Coping pages for lymphedema can be found here:

http://www.cancer.gov/cancerinfo/pdq/supportivecare/lymphedema/patient/

http://www.cancer.gov/cancerinfo/pdq/supportivecare/lymphedema/healthprofessional/

The American Cancer Society has a variety of information on lymphedema. Put lymphedema into the search box at www.cancer.org to pull up the entire list. Of special interest to prostate cancer is the page at

http://www.cancer.org/docroot/MIT/content/MIT_7_2x_Understanding_Lymphedema.asp

 
The National Lymphedema Network, Inc. (NLN), http://www.lymphnet.org/. The NLN also has other links to website that may be of help at: http://www.lymphnet.org/links.html.

Lymphedema People is a website that not only has treatment information, but also has a variety of discussion/support forums.  This is a very comprehensive coverage of the lymphedema world.

Lymph Notes an information resource for people with lymphedema or at risk of developing it and the family, friends, and therapists who care for them.  They also have a book on lymphedema available.

Training Videotapes - may be available from your physical therapist.

See if you can get a copy of a videotape put out by Klose Norton Training and Consulting LLC & Guthrie Healthcare system. The title is: Complete Decongestive Therapy for the Treatment of Genital Lymphedema. This is usually an item loaned to patients by physical therapists.

Another videotape deals discusses the lymphatic system and then shows how to do manual lymph node massage. It also has a demonstration of bandaging. The title is: Self-Care for High-Protein Lower Extremity Lymphedema with JoAnn Rovig, LMP and Lynn Fass, RN and was produced by the Northwest Lymphedema Center -- a non-profit organization.

Journal/book Resources
 

One of the best articles on lymphedema, was written by Patricia O'Brien, M.D. and is found in Principles & Practice of Supportive Oncology Updates, Vol. 2, No. 4, 1999, pp 1-10. The title is "Lymphedema."  A PDF version of this paper can be downloaded by clicking here.  Creation and posting of this PDF was done with the permission of Dr. O'Brien.

Grillo, C., Living With Lymphedema, Cure, Spring 2003, pp 58-61. See www.curetoday.com.  The subtitle is, "An underestimated complication is finally getting the respect it deserves."

Manufacturerers of Lymphedema Related Garments/Equipment

Solaris, Inc., West Allis, Wisconsin manufactures a line of lymphedema treatment products under the Tribute brand, for the swelling, tissue fibrosis and discomfort associated with lymphedema. These are available through your physical therapist and medical supply store and are generally worn at night.  Their website has a thorough explanation of their products. 

Jobst makes lymphedema garments. www.jobst-usa.com. Their custom made garment is called the Elvarex.  Knee length, arm and full leg units can be purchased.

Juzo is a manufacturer of both custom and off the shelf compression garments.  www.juzousa.com

Another list of suppliers can be found at: http://www.lymphnet.org/resource-f.html

Compression Pump Therapy - the Lympha Press. This company makes a sequential pumping system.

Low Level Laser Therapy - The RianCorp manufacturers the LTU-904 unit which recently was granted FDA approval for use with postmastecomy patients. 

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