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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.

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