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StepUp-SpeakOut.Org BlogSpot

Hello and welcome to the StepUp-SpeakOut.Org Blog Spot.

We will be using this blog for fast updates on news and information in the field of Secondary Lymphedema as a result of Breast Cancer.

We will be posting articles and information on new research and treatments, legislative and insurance information, and other pertinent information, and invite your comments.

Saturday, April 11, 2009

Recent Advances in Breast Cancer-Related Lymphedema of the Arm: Lymphatic Pump Failure and Predisposing Factors

Recent Advances in Breast Cancer-Related Lymphedema of the Arm: Lymphatic Pump Failure and Predisposing Factors, Anthony W.B. Stanton, Stephanie Modi, Russell H. Mellor, J. Rodney Levick, Peter S. Mortimer. Lymphatic Research and Biology. March 2009, 7(1): 29-45. doi:10.1089/lrb.2008.1026.

Axillary surgery for breast cancer may be followed, months to years later, by chronic arm lymphedema. A simple ‘stopcock’ mechanism (reduced lymph drainage from the entire limb through surviving lymphatics) does not explain many clinical aspects, including the delayed onset and selective sparing of some regions, e.g., hand. Quantitative lymphoscintigraphy reveals that lymph drainage is slowed in the subcutis, where most of the edema lies, and in the subfascial muscle compartment, which normally has much higher lymph flows than the subcutis. Although the muscle does not swell significantly, the impaired muscle drainage correlates with the severity of arm swelling, indicating a likely key role for muscle lymphatic function. A new method, lymphatic congestion lymphoscintigraphy, showed that the edema is associated with a reduced contractility of the arm lymphatics; the weaker the active lymphatic pump, the greater the swelling. Delayed lymphatic pump failure may result from chronic raised afterload, as in hypertensive cardiac failure, and may account for the delayed onset of swelling. A further novel finding is that lymph flow is raised in both the subcutis and muscle of both arms in postsurgical breast patients who later developed breast cancer-related lymphedema (BCRL), compared with patients who did not develop BCRL. This new observation indicates a predisposition to BCRL in some women. Further evidence for predisposing abnormalities is the finding of lymphatic abnormalities in the contralateral (nonswollen) arm in women with established BCRL. Such predisposing factors could explain why some women develop BCRL after sentinel node biopsy, whereas others do not after clearance surgery. Future research must focus on prospective observations made from before surgery until BCRL develops.

Wednesday, April 1, 2009

High Cost of Lymphedema From Article in US News & World Report

U.S. News & World Report TUESDAY, March 17

In breast cancer survivors, lymphedema -- an uncomfortable swelling of the arm and wrist -- can be one of the most vexing side effects of treatment. Now, a new study has found that women who develop lymphedema fare worse than women without the condition and have higher out-of-pocket medical costs after radiation and surgery.

Breast cancer survivors who develop lymphedema report a lower quality of life, higher levels of anxiety and depression, an increased likelihood of chronic pain and fatigue and greater difficulty functioning socially and sexually, according to a study in the March 16 online issue of the Journal of Clinical Oncology.

Lymphedema also boosted two-year, postoperative medical costs by $14,877 to $23,167, the study found. The additional cost came from office visits, treatments for infections and mental health services, including prescriptions for antidepressants. One reason for higher out-of-pocket costs: Insurance companies don't always fully cover lymphedema treatments, which can include compression garments and specially trained therapists who provide massages and physical therapy to help the area drain, said Ya-Chen Tina Shih, an associate professor of health economics at the University of Texas M.D. Anderson Cancer Center, in Houston, and an author of the study.

Although federal regulations and about 21 states require private insurance to cover lymphedema treatments after mastectomies, the laws are not specific about what constitutes lymphedema treatment and insurance companies have wide latitude in determining benefit levels, Shih said. "Right now, it's really up to insurance companies' interpretation for what is appropriate lymphedema treatment," Shih said.

Lymphedema is caused by a buildup of lymphatic fluid, usually as a result of damage to the lymphatic system from radiation or surgery. Melanoma and cancers of the head, neck and pelvic area can also leave people susceptible to the condition, said Dr. Brian Lawenda, clinical director of radiation oncology at the Naval Medical Center in San Diego and a lieutenant commander in the U.S. Navy.

To some breast cancer survivors, lymphedema, which can develop years after radiation and surgery, is as distressing as the initial breast cancer diagnosis, the study found. Using medical claims information on 1,877 women, researchers found that 10 percent sought treatment for lymphedema.

However, that was probably an underestimate of the true incidence, Shih said, because there is no standard definition for lymphedema, doctors may not list lymphedema as a reason for the office visit and not all women seek treatment.

Previous research has shown that up to 50 percent of breast cancer survivors develop lymphedema, with 32 percent having persistent swelling three years after surgery, according to the study. "It's a terribly overlooked problem," said Robert Smith, director of cancer screening for the American Cancer Society. "Many of these women have significant out-of-pocket expenses, and prolonged and chronic health problems, as a result of it. It's not curable, and once women have lymphedema, unless it's properly managed and treated, it can become progressively worse."

While some have mild cases, for others, the swelling can lead to loss of motion in the affected arm, cysts, skin thickening and infections such as lymphangitis, a bacterial infection of the lymphatic vessels, or cellulitis, an inflammation and infection just below the surface of the skin. About a third of people with lymphedema get infections, which occur because the fluid backup inhibits the immune system's response, Lawenda said.

The study found that women in the western United States were more likely to have filed lymphedema-related insurance claims than those in the Northeast. Women in all regions of the country probably suffer from the condition equally, Shih said, but more states in the West have passed laws requiring insurance companies to cover treatments.

Standard treatments include keeping the skin clean and moisturized, being careful when clipping nails, wearing compression sleeves to prevent swelling, doing therapeutic exercises and having massage to promote manual lymphatic drainage, Lawenda said. "It is a condition that's not curable," he said. "However, it is manageable, treatable and will improve."



Comments by StepUp-Speak-Out Editorial Board

Indeed, early patient education, practice of risk reduction and self-managment, can make a huge difference in both the development of lymphedema, its course and treatment.

A recently published study showed that accurate patient education is a critical dimension of lymphedema risk-reduction. Knowledge of lymphedema and its risk reductions is essential to all breast cancer patients, and makes a difference in their long-term quality of life.

In this study only fifty-seven percent of the participants reported that they received lymphedema information.

"Cancer-Related Lymphedema: Information, Symptoms, and Risk-Reduction Behaviors," Authors: Fu, Mei R.; Axelrod, Deborah; Haber, Judith, Source: Journal of Nursing Scholarship, Volume 40, Number 4, December 2008 , pp. 341-348(8)

We at StepUp-SpeakOut are committed to changing this. It is our goal that every breast cancer patient receives full information on lymphedema and its risk reductions before his or her surgery.

Lymphaticovenular Bypass for Management of Lymphedema in Breast Cancer Patients

Lymphaticovenular Bypass for Management of Lymphedema in Breast Cancer Patients: A Prospective Analysis

David W. Chang, M.D.; MD Anderson Cancer Center, Houston TX

"Purpose: Lymphedema is a common and debilitating condition following surgical and/or radiation therapy for breast cancer. However, lymphedema is difficult to manage and surgical options have been limited and controversial. The purpose of this prospective study is to provide preliminary analysis of lymphaticovenular bypass for upper limb lymphedema in patients with breast cancer.

Methods: Twenty consecutive patients with lymphedema of upper extremity secondary to treatment of breast cancer who underwent lymphaticovenular bypass using "super-microsurgical" approach from December 2005 to September 2008 were evaluated. Mean age was 54 years. Of 20 patients 16 patients had received preoperative XRT and all patients had received axillary lymph node dissection. All patients presented with stage 2 or 3 lymphedema with mean duration of 4.8 years and the mean volume differential of lymphedema arm compared to unaffected arm of 34%. Evaluation included qualitative assessment and quantitative volumetric analysis prior to surgery, at 1 month, 3 months, 6 months and at 1 year following the procedure. All data were collected prospectively.

Results: Mean number of bypasses performed on each patient was 3.5 and the size of bypasses ranged from 0.3 mm to 0.8 mm. Mean operative time was 3.3 hours (2 to 5 hours). Hospital stay was < 24 hours in all patients. Mean follow up was 18 months. Of 20 patients, 19 patients reported significant clinical improvement following the procedure. Mean volume reduction at 1 month was 29%, at 3 months 36%, at 6 month 39%, and at 1 year was 35% (Fig 1). In 3 patients with clinical improvement, no significant quantitative improvement was noted. There were no postoperative complications or exacerbation of lymphedema.

Conclusion: Lymphaticovenular bypass using "super-microsurgical" approach appear to be effective in improving the severity of lymphedema in patients with breast cancer. Long term analysis is needed."

Here's a link to the abstract from American Association of Plastic Surgeons:

Comments by the StepUp-SpeakOut Editorial Board:

Note the small number of patients on whom this technique was performed: 20 women with LE following BC treatment. Of those 20 patients, 19 reported "clinical" improvement (presumably qualitative assessment of some sort) after the bypass surgery. Sixteen of the 19 patients who reported a "clinical" improvement also had a significant "quantitative" improvement (presumably a reduction in arm volume measurement); but the other 3 who had a "clinical" improvement did not have a significant improvement in quantitative measurements. The patients were followed for 18 months after their bypass surgeries, but data are only reported for 1 year post-bypass surgery.

It's an interesting but preliminary study. They need greater numbers of patients and more follow-up time (and perhaps a more comprehensive assessment) to see if this really works. Also, there is no mention whether other, conventional LE therapy was provided to those women while they were recovering from their bypass surgery. For a fuller explanation, see the analysis of an article about this procedure at from which we quote:

"Lymphaticovenular bypass surgery is difficult to do and requires special surgical training. This may be one reason why it's not a common lymphedema treatment. While the women in this study did receive some benefit from the surgery, the decrease in arm size didn't last and none of the women were considered cured of lymphedema. More, larger studies are needed to see if the results last over time, as well to figure out if the surgery works for a variety of women. " [Emphasis supplied]

We have written to Dr.Chang and he was quick to respond and interested in conveying information. This is what we learned:

They measure by volume displacement;
The surgery is not curative;
The surgery is currently considered experimental and not covered by Medicare or insurance;
Dr. Chang is committed to helping women with LE: