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PLEASE
PARTICIPATE IN OUR RESEARCH SURVEY |
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Announcing a research study by
Dr. Mei Fu of New York University School of
Nursing, and StepUp-SpeakOut.org.
Please participate!
We would value your response
to the questions on our on-line survey.
Survey Regarding Breast Cancer
and Lymphedema Symptom Experience
If you are a female
21 years of age or older and have been diagnosed
with and treated surgically for breast cancer,
you are invited to share your experience of
breast cancer in this online study.
The purpose of this
study is to examine the reliability and validity
of the Breast Cancer and Lymphedema Symptom
Experience Index, an instrument to evaluate
breast cancer survivors' symptom experience.
Your valuable input will help researchers better
understand women's experiences of breast cancer,
including symptoms, distress, and quality of
life. Ultimately, the information obtained from
the study will help to gain insights into the
needs of women who have survived breast cancer
so that more personalized care can be provided.
The New York University Institutional Review
Board "IRB" (an ethical review board that
monitors research involving human subjects) has
approved this research study.
The study is brief and will take about 10-15
minutes of your time. You can skip any questions
that you might feel uncomfortable in answering.
Your participation is voluntary and anonymous.
We will keep your responses confidential.
Your input is valuable. Please take the time to
complete this survey. We appreciate your
response!
Copyright 2010,
College of Nursing
New York
University
We ask our therapist friends and health care
providers to please suggest their patients take
this survey.
Thank you for your participation. Your
feedback will help further research on
breast cancer and lymphedema symptoms in
order to improve patient care.
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Welcome to
StepUp–SpeakOut (SU-SO)
SU-SO™ Application Pending
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Resources,
support and advocacy for women and men with breast
cancer-related lymphedema
( For the latest News and Updates on
Research, Treatments, Legislation, Insurance Laws and Action
Alerts, please visit our
Blog Spot.
It is updated with the latest news before our entire website is
updated. Also visit our new page on
Weightlifting and Lymphedema,
Comments on Study
published in New England Journal of Medicine and Questions
and Answer with Dr. Kathryn Schmitz, Lead Author of study.)
What did you think of when
you first heard the word "lymphedema?" Most of us know what
lymph nodes are, or at least we've noticed that they can
swell when we have an infection. But few of us – and
unfortunately, not even all our doctors – realize just how
important our lymphatic system is in controlling infection
and disease.
Lymphedema
is one of the scariest long-term side effects of breast
cancer treatment. It can result when some of our lymph nodes
are removed or damaged by surgery, radiation, or other
routine cancer treatments.
Disfiguring, distressing, and often disabling, lymphedema
can only be managed and controlled, not cured. All of us who
have been treated for breast cancer are at risk for
developing this condition, and that risk remains for the
rest of our lives.
Once we
have lymphedema, it's up to us to manage the day-to-day care
that's necessary to keep our all-important lymphatic system
functioning in the most efficient way possible, continuing
to protect our bodies from infection and disease.
But there's hope! New directions in research hold promise for both improved prevention
strategies and eventual cure. And while we wait for that
bright future, we can join together to encourage one
another, improve the quality and availability of lymphedema
treatment, and increase lymphedema awareness among
healthcare professionals and the public alike.
OUR
MISSION
As women with post-breast
cancer lymphedema we have struggled to uncover the
information we've needed about this condition, to find good
treatment for it, and to keep it in control. With the help
of our fellow lymphedema sisters and brothers we have even
learned to live comfortably with it. Out of those
experiences and a desire to share our discoveries with
others, we have created this site in order
to STEP UP:
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To provide accurate
and accessible information about lymphedema, its
prevention and treatment, to all women and men who have
been treated for breast cancer.
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To raise awareness of
lymphedema risk and promote risk reduction practices
among all breast cancer veterans.
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To support those with
breast cancer as they pursue prevention and treatment
options for lymphedema, and to help them find the
resources they need for managing both the risk and the
treatment of this condition.
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To represent the
concerns and interests of women and men with lymphedema
and advocate with them in the medical and research
communities, the political arena, and among the general
public.
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To promote research
into the prevention, treatment and cure of lymphedema.
If you are
a woman or man who has been treated for breast cancer, we
challenge you to
SPEAK OUT about lymphedema, and join us in
advocating for the treatment, services, products, financial
coverage and just plain recognition we need. Together, we
can bring about needed changes by:
AND
FINALLY,
thanks for stopping by. We hope you'll find the information and
encouragement you're looking for here, and we welcome your
comments and suggestions for ways to make this site even more
responsive to the needs of breast cancer veterans everywhere.
Oh – and if you're not a
breast cancer survivor? You're welcome, too. Maybe you're a
person whose lymphedema was caused by something other than
breast cancer, or an interested medical professional, a
compression garment maker or bandage supplier, or the loved
one of someone who's struggling with lymphedema. We're
really grateful for your interest, and we hope you'll join
with us in learning about lymphedema and promoting
awareness.
Frequently Asked Questions Regarding Lymphedema
STEP
OUT – SPEAK OUT:
TOGETHER WE CAN MAKE THE DIFFERENCE!
Please contact us with your comments and suggestions!
STEP OUT–SPEAK OUT IS
FUNDED THROUGH PUBLIC DONATIONS.
listen to
teleconference of
LBBC
held on Februry 20, 2009 |
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Speaker: Andrea L. Cheville,
MD, MSCE
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Learn about
the causes, treatment and prevention of lymphedema.
Understand the importance of early detection and get
the latest news on medical and holistic methods that
manage and treat the condition. Dr. Cheville
discusses techniques for improving your quality of
life. |
Download Podcast |
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DISCLAIMER:
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The materials on this World Wide
Web site are provided for informational purposes only, do not
constitute medical advice, do not necessarily reflect the
opinions of any physicians, and are not guaranteed to be
correct, complete or up-to-date. This World Wide Web site
is not intended to create a doctor-patient relationship between
you and The StepUp-SpeakOut.Org group, and you should not act or
rely on any information in this World Wide Web site without
seeking the advice of your own physician or healthcare provider. Lymphedema
requires appropriate evaluation, treatment and education by a
certified
lymphedema therapist. -
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The lymphedema resources and
information pages on this World Wide Web site and the articles
and links to other resources on the internet are provided as
citations and aids to help you identify and locate information
and other internet resources that may be of interest to you
regarding lymphedema, and are not intended to state or imply
that the StepUp-SpeakOut.Org group is affiliated or
associated with, agrees with or is legally authorized to use any trade name,
registered trademark, logo, legal or official seal or
copyrighted symbol that may be reflected in the links.
We do not endorse any specific products, but
merely offer publicly available information regarding
 them.
Page Last Modified
04/27/2010 |
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SU-SO--Together we Can Make the Difference in Lymphedema
