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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.

Friday, October 30, 2009

Our Fall, 2009, Newsletter is Out!

For those of you who do not subscribe to our newsletter, you can find our Fall, 2009 Newsletter here.

Our Newsletter Archives can be found here.

If you would like to subscribe to our newsletter, please go here to sign up.

Weightlifting and Lymphedema Study in New England Journal of Medicine

Please visit our page on Weightlifing and Lymphedema, Comments on Study published in New England Journal of Medicine and Questions and Answers with Dr. Kathryn Schmitz, Lead Author of study.

Monday, June 1, 2009

Refusal of Suppliers to File Medicare Claims Is Illegal

I have been advising lymphedema patients to appeal every denial of reimbursement for the compression bandages and garments used in the treatment of their lymphedema. Some suppliers do not file claims, claiming that these items are not covered by Medicare.

This refusal is illegal since these items have been found to meet the coverage criteria for "prosthetic devices" by several Administrative Law Judges, and the decision that they are not covered is not a decision that a supplier can make. CMS has recently published a clarification of the rule that requires Medicare-enrolled Suppliers to file a claim on behalf of a Beneficiary. This educational article can be downloaded as follows:

Mandatory Claims Submission and its Enforcement

The Social Security Act (Section 1848(g)(4)) requires that claims be submitted for all Medicare patients for services rendered on or after September 1, 1990. This requirement applies to all physicians and suppliers who provide covered services to Medicare beneficiaries, and the requirement to submit Medicare claims does not mean physicians or suppliers must accept assignment.

Compliance to mandatory claim filing requirements is monitored by CMS, and violations of the requirement may be subject to a civil monetary penalty of up to $2,000 for each violation, a 10 percent reduction of a physician’s/supplier’s payment once the physician/supplier is eventually brought back into compliance, and/or Medicare program exclusion. Medicare beneficiaries may not be charged for preparing or filing a Medicare claim.

For the official requirements, see the following:

Social Security Act (Section 1848(g)(4)(A); "Physician Submission of Claims" at on the Internet.

Requirement to file claims – The Medicare Claims Processing Manual, Chapter 1, Section 70.8.8: on the CMS website.

Robert Weiss
Lymphedema Patient Advocate

Gloves and Hygiene

With everybody telling us to wash our hands frequently, I'm looking for solutions to the problem of how to keep my gloves clean throughout the day. I've written to a number of garment makers, but they're pretty much clueless (some are surprised nobody's asked them that before!) Here's what I've discovered so far:

  1. Wearing plastic gloves over my compression gloves makes my hands sweat instantly and soaks my compression gloves in a matter of minutes -- miserably uncomfortable, and not especially helpful from the standpoint of fungal infections either.
  2. Alcohol applications like Purell will ruin the fabric of our compression garments.
  3. Dry cleansers like dry shampoo give your hair a lift by cutting down on the grease, but they don't actually clean anything.
  4. Dry antiseptics have nasty things in them like boric acid that you wouldn't want on your hands.
  5. I can take my gloves off and wash my hands a lot when I'm doing anything messy or unhygienic (even though with compression garments that's not very easy), but that doesn't prevent them from collecting germs and crud from doorknobs or other innocent-looking surfaces.
  6. I can (and do) just wash my gloves throughout the day while they're still on my hands, using hot water and Ivory or Dove hand soap. I dry them on a thick towel just like I would my hands alone, but of course they're still damp. I can't handle books or papers until they dry (here in the desert that only takes 15 or 20 minutes). But if it's cold (think, air conditioning) that doesn't work, because my hands freeze. And if I lived somewhere humid it wouldn't be a good idea to leave my hands damp for long enough for it to dry out.
  7. And here's a tip from one of the garment makers: For goodness sake wash the things every day! – Binney
  • As a pianist who plays with gloves occasionally, you might find these good for over-gloves - you could wear them over your gloves in public: They are a stretchy (not too stretchy) nylon...and come in cotton too. I found that the cotton lose their shape, however, they absorb dirt and oils better and thus are a bit more tactile. The nylon ones are slippery. I have a typical woman's size hand and I ordered woman's which I wear alone. The nylon ones wash great in the laundry (with bleach even). The cotton ones shrink. you could always get a man's size. I find them pretty easy to work with. I can type and play the piano while wearing them. I wear the nylon ones all the time in the winter. I found that you can turn the gloves inside out and trim off the extra fabric along the finger seams for extra dexterity. – apple
  • If you are dealing with a situation where you know your compression gloves will be in water or in a situation where they will get very wet, be sure to wear either sugical gloves, dishwashing or rubber garden gloves over your compression gloves. We don't want our compression gloves to stay wet long enough to develop a breeding ground for fungus. For regular protection from germs and dirt, I prefer the stretch nylon gloves mentioned by Apple at Stretch Nylon Inspectors Gloves ~ They fit nicely over compression gloves. I order them by the dozen. I keep several pair with me in my handbag, so I can put a fresh pair on frequently, then wash them all at night and start my day off with several clean pairs of nylon gloves and surgical gloves in my bag. It has made a real difference in my feeling safer at keeping germs and dirt at bay. You can also easily dye the nylon gloves to match your various outfits--OneBadBoob
  • One thing I do in public restrooms is grab a paper towel before I turn off the water, use the towel to turn off the water so I'm not touching the dirty handle with my clean hand. I also use a towel to open the door when I leave. Of course, then I'm out in the world without a clean paper towel, and I do touch things, but I also have developed some little tricks to avoid getting germs on my hands: I push the elevator button with my elbow, and I use the hem of my shirt or my sleeve (if I'm wearing long sleeves) to open doors or flip switches. – aprilintexas
  • When I have to use a keyboard that is used by others, I wipe it down with an anti-septic wipe. Phones too. – Kira
  • On that note, don't use the 'community pen' at businesses when writing checks or noting use of your check card in your register or signing in on the guest register at businesses. – lvtwoqlt
  • Also, cough and sneeze into your elbow or tissue, not your hands. – leaf

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:

Tuesday, March 31, 2009

New study hopes to answer, "Who will develop lymphedema?"

Currently there is no way to predict exactly who will or will not develop lymphedema following breast cancer, but a new preliminary study done in the UK hints at a predisposition among some people that may make such predictions possible in the future. Knowing your risk may help you plan how best to protect yourself, and assure the earliest possible treatment should lymphedema develop.

Lymphatic Drainage in the Muscle and Subcutis of the Arm After Breast Cancer Treatment
Anthony W. B. Stanton, Stephanie Modi, Thomas M. Bennett Britton, Anand D. Purushotham, A. Michael Peters, J. Rodney Levick, Peter S. Mortimer

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Support the 21st Century Cancer ALERT Act

From Komen for the Cure Advocacy Alliance

On March 26, 2009, a crucial cancer bill was introduced in the U.S. Senate.

The 21st Century Cancer ALERT (Access to Life-saving Early Detection, Research and Treatment) Act – sponsored by Senators Edward Kennedy and Kay Bailey Hutchison – promises to reignite America's war on cancer by strengthening cancer research, emphasizing early detection, and improving cancer care for underserved populations.

Senators Kennedy and Hutchison have made passing the ALERT Act a priority for 2009. We can help rally support in Washington by urging our legislators to cosponsor the legislation and ensure it moves quickly through the Senate and the House, all the way to President Obama's desk.

Click here to urge your Senators to support the ALERT Act from day one!

We all know the harsh realities of cancer:

40 percent of Americans will be diagnosed with cancer at some point in their lives.
1.4 million new cases of cancer will be diagnosed this year alone.

Cancer claimed more than 565,000 American lives in 2008 – 1,500 people a day.

But in spite of these staggering figures, funding for research, early detection services, and treatment programs is disappearing. That's why it's so important we seize this opportunity to turn our attention back to fighting this terrible disease.

Ask your Senators to support the Cancer ALERT Act and to make passing the bill a priority now.

ALERT stands for Access to Life-saving Early Detection, Research and Treatment:
Early Detection – The ALERT Act will place an emphasis on early detection and promote the discovery and development of biomarkers to detect cancers at the earliest possible stage when cancer is most treatable. The bill also has a particular focus on childhood, rare, and high-mortality cancers.

Research – The ALERT Act will strengthen the cancer research process by promoting public-private partnerships and collaboration between government agencies. The bill also has a focus on translational research so new discoveries and breakthroughs in the laboratory make their way to patients' bedsides as quickly as possible.

Treatment – The ALERT Act will improve access to cancer care for underserved populations by expanding access to clinical trials, patient navigation services, and screening and treatment for colorectal cancer.

Let's take advantage of the momentum that has brought the 21st Century Cancer ALERT Act this far. Click here to email your Senators TODAY!

Together, we can help make this landmark cancer legislation the law of the land and help reignite the war on cancer!

Ambassador Nancy Brinker
Founder, Susan G. Komen for the Cure®
Board Member, Susan G. Komen for the Cure® Advocacy Alliance

Help Increase Survival for Young Women with Breast Cancer

From Advocacy Aliance, Komen for the Cure

You know that one in every eight women will be diagnosed with breast cancer in her lifetime.
What you may not know is that when breast cancer occurs in women under the age of 40, it is often detected at later stages, is more likely to be aggressive, and may be less responsive to hormone therapies.

Despite these facts, there is a lack of awareness about the risks and unique challenges facing young women with breast cancer. A new bill just introduced in Congress would change that.
Click here to urge your members of Congress to co-sponsor the Breast Cancer Education and Awareness Requires Learning Young (EARLY) Act of 2009 – introduced by Representatives Debbie Wasserman Schultz (D-FL) and Sue Myrick (R-NC).

Today, Congresswoman Wasserman Schultz revealed that she is a breast cancer survivor and has undergone seven major surgeries in little over a year since her diagnosis, while continuing to serve as a member of Congress. Please join me in applauding Congresswoman Wasserman Shultz for taking her personal battle against breast cancer public in an effort to shine a light on the issues young women face.

Young women with breast cancer struggle with many issues that women who are diagnosed with breast cancer later in life may not face. And because diagnosing breast cancer in young women can be more difficult, these women often don't learn about their disease until it is in advanced stages and more life threatening.

The EARLY Act will address these unique concerns in three key ways:

Public education. The bill will provide funding for an aggressive public education and media campaign targeting young women, with an emphasis on women under age 40 who are at higher risk due to their race, ethnicity or genetic heritage.

Resources for health professionals. Through additional training, health care professionals will be more aware of the risk factors, the opportunities for genetic counseling and testing, and the unique challenges that face young women diagnosed with breast cancer.

Support services. Younger women face additional strains including an increased impact on their dating lives, careers and ability to have children. This bill will address these concerns by providing grants for support services for young women who have been diagnosed with breast cancer.

When breast cancer is detected early, the five-year survival rate is 98 percent. But because many younger women are diagnosed at later stages with more aggressive breast cancer, their survival rate is lower. With increased awareness for genetic counseling and testing, early detection, and treatment, we can improve the odds. But we need your help.

Please take a moment to write your representatives today and urge them to support this important bill.

Thank you for all that you do. Together we can one day end the suffering and death caused by cancer.

Ambassador Nancy G. Brinker
Founding Chair, Susan G. Komen for the Cure®
Board Member, Susan G. Komen for the Cure® Advocacy Alliance

Monday, March 30, 2009

American Lymphedema Framework Project

National StakeHolers Conference


On March 16, 2009 over 70 stakeholders in the area of lymphedema met in Glenview, Illinois for the American Lymphedema Framework Project Stakeholders Conference. Included in this group were:

  • Lymphedema patients & advocates
  • Lymphedema therapists
  • Industry representatives
  • Researchers and professors
  • Medical doctors
  • Nurses

    The meeting was conducted using an Open Space format and the preliminary findings are posted here. In the next few weeks, we will capture the nearly 50 posters that were created throughout the day and analyze the preliminary proceedings more completely. Once this has been completed, a narrative summary of the events at the conference will be created, emailed to participants, and available at

    Thank you to those who joined us at the National Stakeholders Conference. If you were not able to attend, you can still participate in the ALFP. Please sign up for email updates in the tab to the left to stay current with ALFP activities.

    ALFP Stakeholders Conference Preliminary Proceedings