Information on Lymphedema

What’s New:

 

 

-In May 2012 the NLN released its updated Position Paper on Lymphedema Risk Reduction Practices. They now have two versions. The first one is more detailed Position Paper that includes up-to-date references. The second one is a summary of the detailed Position Paper and is especially geared towards our patient population.

-In February 2012 the NLN released a supplement to its position paper ”Screening and Measurements for Early Detection of Breast Cancer Related Lymphedema: The Imperative.”  In the past, there was no evidence to suggest that early detection could make a difference in early treatment outcomes for breast cancer related lymphedema (BCRL), but this has changed, and is now reflected in this supplement.

- In December 2011 the NLN updated its position paper on exercise and lymphedema. Scroll to the bottom of this page for the information.

- Check out the latest on the federal bill HR2499 in Congress that would require Medicare to pay for compression garments.

- If you are a lymphedema patient and would like to participate in lymphatic research, the Lymphatic Research Foundation (LRF) has launched the National Lymphatic Disease and Lymphedema Registry and is actively recruiting patients to register. This register paves the way for future clinical trials of experimental drugs and therapies designed to treat lymphatic diseases. While registration takes some time, I found it worthwhile to participate in this important initiative.

- For the latest information on physical activity and lymphedema (the PAL trial), visit Penn Cancer’s PAL site. This site is for those interested in further resources about the PAL study and includes frequently asked questions.

- The Genetic Alliance organization has created a variety of tools that aim to alleviate misinformation about genetics to empower healthy consumers.  One such tool is the online database, Disease InfoSearch, which is the premier resource for newly diagnosed patients and families looking for information about a particular condition and the related disease-specific support groups. A second tool is Trust It or Trash It?, a guide for consumers and providers to determine if the health information they receive is reliable. A third tool is Does It Run in the Family?, which allows users to create personalized booklets on their family health to start conversations about risk factors and other genetic information.

- For the latest advice on traveling with lymphedema or if at risk for lymphedema, see the Lymphedema Blog on Lymphedema and Vacation.

Clothing Tips:

Some good tips for disguising asymmetry  or swollen limbs are listed at Jane’s Place.

And many companies now offer fashion clothing and accessories specifically designed for those who have completed breast cancer treatment or have developed arm or leg lymphedema. Here are a few:

The Cast Clothing Co.

Holy Clothing

Pink Ribbon Lingerie (UK based)

Jane’s Place (UK based)

The Bootmakers (UK based)

CrocsRx

Definition of Lymphedema:

Lymphedema is the swelling of a human body part caused by an abnormal accumulation of fluid, proteins, and cellular waste in the tissues under the skin. It occurs when there is a problem in the lymphatic system:

  • The failure of lymph vessels to develop properly
  • Damage to lymph vessels by trauma, surgery, or infection
  • Removal or destruction of lymph nodes, usually during treatment of cancer

Lymphedema can be a painful and disfiguring condition. It can lead to decreased mobility, repeated episodes of infections (cellulitis, erysipelas, lymphagitis), and mental depression. It can require constant and chronic medical care and expense. Severe cases involve thickening of the skin, hardening of the tissues (fibrosis), leaking of fluid, massive swelling and skin changes such as warty growths. The extreme version of lymphedema is called elephantiasis when the limb becomes enormous and distorted, with drastic changes in the skin and tissue. Even when the degree of lymphedema is relatively mild, it can make wearing regular clothes more difficult, limit activities, and increase the risk for infections. Because lymphedema is a chronic progressive condition, even mild cases can eventually escalate and have serious consequences if not properly treated.

(Taken from Lighthouse Lymphedema Network)

General Tips on Lymphedema:

Locating a Vascular Specialist in Your City (some professional organization partners will let you search their database of qualified vascular specialists):

Lymphedema Treatment Act 2010:

If you know anyone who has lymphedema or is at increased risk for acquiring lymphedema, check out the Lymphedema Diagnosis and Treatment Cost Saving Act of 2010, H.R. 4662. Introduced into the U.S. House of Representatives by Congressman Larry Kissell, this Act would offer coverage for Medicare beneficiaries with lymphedema from any cause. It would provide the medically recommended protocols (compression bandages, garments and supplies used daily in the treatment and management of lymphedema) and reduce the incidence of lymphedema-related infection. Although this legislation relates specifically to a change in Medicare law, it would also have the almost certain effect of ensuring all private insurance policies follow suit.

Winter 2010-2011 News on Breast Cancer and Lymph Node Removal

A new study reports that many women with early-stage breast cancer no longer need to have cancerous lymph nodes removed from their armpit. The study, conducted at the University of Texas M.D. Anderson Cancer Center and more than 100 other sites, found that taking out cancerous lymph nodes from a certain subset of women does not change their treatment plan, improve survival or make the cancer less likely to recur.  This finding repudiates the time-honored belief that lymph node removal prevents recurrence and/or improves survival.  See the New York Times article, as well as the question-and-answer session from the author of this article. I agree with the author when she says, “The results apply to women whose condition is like those in the study: stage T1 or T2 tumors (less than two inches across), no palpable lymph nodes, no metastases to other parts of the body and no more than two positive lymph nodes on the sentinel node biopsy. A woman with these characteristics who is having a mastectomy and the other treatments would seem to fit the bill, but the ultimate decision has to be made with a surgeon and an oncologist.”

A risk of lymphedema exists even after only a few nodes are taken for sentinel node biopsy, but the risk is much lower than when many nodes are removed. Thus, these results are encouraging and may lead to changes in practice so as to reduce further the incidence of lymphedema. But your doctor is still the ultimate expert on your particular treatment plan.

Lymphedema and Obesity

Weight control plays a major role in the management of lymphedema. Obesity or morbid obesity can actually cause a secondary form of lymphedema. While it may start as a “temporary” lymphedema the lymphatic vessels can be sufficiently damaged that if the weight were lost, the lymphedema would remain. The weight actually crushes and overloads the lymphatics. When this occurs the patient will begin exhibiting symptoms of further damage caused by lymphedema complications, such as infections, weeping wounds and fibrosis. Below is an article on obesity-related lymphedema by a certified lymphedema therapist:

Obesity-Related Lymphedema and the Effect on Wound Healing
Kathryn Petersen, PT CLT-LANA


In the United States lymphedema is classically seen as a sequelae of cancer treatment, especially breast cancer.  Although this continues to be the primary cause of lymphedema in the United States, a lesser known cause is becoming more common.  Obesity is reaching epidemic proportions in this country, and with this, in many cases, comes lymphedema.

Normal lymph circulation involves fluid being forced out of the blood vessels into the spaces between the cells of the body.  It is the job of this fluid to “clean up” between the cells by collecting waste products. The small lymphatic vessels then collect the fluid and transport it via larger ducts to the lymph nodes which clean it.  It is then transported back to the blood circulation at the heart to repeat the cycle.

Obesity can cause increased pressure in the veins of the legs.  This increased pressure forces more fluid out of the blood vessels and into the spaces between the cells.  When this fluid volume becomes too much for the lymph system to handle, lymphedema results.  Obesity has also been shown to hinder the flow of lymph, thereby backing it up into the tissues of the body and causing lymphedema.  In addition, obesity tends to decrease a person’s mobility which can further decrease lymph collection and transport.

The increased fluid pressure in between the cells of the body makes it more difficult for vital oxygen and nutrients to reach the cells.  This can lead to chronic inflammation of the tissues and tissue fibrosis (hardening).

Skin ulcers (wounds) are a common complication of lymphedema, especially when the lymphedema results from obesity.  Ulcers can start as red patches on the skin that slowly break down into an open wound, or a blister that breaks open.  Or the limb may sustain an injury such as a scratch or a puncture that never heals.  Studies have shown that the skin of an obese individual tends to be weaker than that of a lean individual, making it easier for wounds to form.  Wounds also have a harder time healing when a person is obese.

The accumulated protein rich fluid in between the cells is also a perfect breeding ground for bacteria.  This means that even the slightest insult to a limb with lymphedema can result in an infection known as cellulitis.

Frequently wounds on a lymphedematous limb leak fluid that can then damage the surrounding skin and cause more wounds, or enlarge the existing one.  When treating lymphedema related wounds it is extremely important to address the edema.  These wounds will either not heal at all, or will heal with great difficulty if the underlying swelling is not addressed, and will certainly reoccur if the edema is not managed effectively for the long term.

The gold standard for lymphedema treatment is complete decongestive therapy (CDT) which includes two interdependent phases.  The first is an intensive phase involving compression bandaging, manual lymphatic drainage (MLD), skin care, remedial exercises, and measuring and fitting for compression garments.  The second is a management phase that must include meticulous skin care, night bandaging (or equivalent), and day compression garments.

Wound management is very effective when combined with the intensive phase of this treatment approach.  Most lymphedema related wounds respond extremely well to the pressure provided by compression bandaging when combined with an absorbent wound dressing that prevents the wound drainage from further damaging the skin.  With correct management, which must include the full effort and cooperation of the patient, the result is usually a rapid and significant decrease in drainage from the wound and promotion of new skin growth allowing for greatly accelerated wound healing.  The maintenance phase must be strictly adhered to in order for the wounds not to reoccur.

When lymphedema and wounds occur in an obese patient it is vitally important to address the obesity along with the edema and wound management.  Studies have shown that lymphedema can improve significantly with weight loss.  Wight loss will also greatly assist in wound healing, and the prevention of recurrence.  In addition to this, obesity may hinder the effective implementation of the lymphedema management phases since they require a certain amount of mobility for self-bandaging and garment donning and doffing.

It is mandatory to change both diet and activity level to promote a gradual, effective and long lasting weight loss.  This will decrease the pressure on the blood vessels, improve skin health, and improve lymphatic flow.  It will also allow improved mobility which helps the muscles of the body move blood and lymph fluid in the circulation.  

Since weight loss is much easier in concept than in practice, a multidisciplinary approach may ideally include a nutritionist as well as a physician knowledgeable in lymphedema, and a certified lymphedema therapist.  A wound care nurse working closely with the therapist may also be useful depending on the lymphedema therapist’s experience and comfort level working with wounds.

Full patient participation and commitment to the treatment is a key component to success.  The challenges should be made completely clear to any patient considering undergoing the treatment, and it must be
understood that this is a lifetime commitment to the management of an “incurable” pathology.  But although the treatment of these complex cases involves a considerable time, and often financial commitment on the part of the patient, the outcomes tend to be well worth the effort.

Reference Sources:
1) Yosipovitch G, DeVore A, Dawn A.  Obesity and the skin: skin physiology and skin manifestations of
obesity.  Journal of the American Academy of Dermatology. 56(6):901-16; quiz 917-20, 2007 Jun
2) Gallagher SM. Morbid obesity: a chronic disease with an impact on wounds and related problems.  
Ostomy Wound Management. 43(5):18-24, 26-7, 1997 Jun.
3) Farshid G, Weiss S. Massive Localized Lymphedema in the Morbidly Obese: A Histologically Distinct
Reactive Lesion Simulating Liposarcoma. Lippincott Williams & Wilkins, Inc, Volume 22(10), October
1998, pp 1277-1283, 1998
4) Fife CE. Benavides S. Carter MJ. A patient-centered approach to treatment of morbid obesity and lower
extremity complications: an overview and case studies. Ostomy Wound Management. 54(1):20-32, 2008
Jan.
5) Shaw C, Mortimer P, Judd PA.  A randomized controlled trial of weight reduction as a treatment for
breast cancer-related lymphedema. Cancer. 110(8):1868-74, 2007 Oct 15.
6) Davis JM, Crawford PS.  Persistent Leg Ulcers in an Obese Patient with Venous Insufficiency and
Elephantiasis. JWOCN, 29:55-60, 2002 Jan

See other articles on obesity and lymphedema at Lymphland.com.

Lymphedema and Exercise

An e-newsletter was sent out December 1, 2011 to National Lymphedema Network members and supporters regarding the updated NLN position paper on exercise and lymphedema:

Dear Friends of NLN, 
I am pleased to enclose our updated Position Paper on Exercise. I am not only amazed but proud of how far we have come since we posted our last version in 2009. The field of Lymphology is rapidly evolving and we have seen many new positive clinical studies from researchers in and outside the United States. Especially research in exercise and LE is promising, and provides safe guidance to our many patients.

A special thank you to Dr. Nancy Hutchison who re-wrote this Position Paper with support of members of the NLN Medical Advisory Committee.

And as always, if you have questions or comments do not hesitate to contact me at saskiat@lymphnet.org.

Kind Regards,

Saskia R.J. Thiadens RN

*****

For basic reliable news on exercise and lymphedema, click here.