support and advocacy for women and men with breast
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
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.
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.
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:
To provide accurate
and accessible information about lymphedema, its
prevention and treatment, to all women and men who have
been treated for breast cancer.
To raise awareness of
lymphedema risk and promote risk reduction practices
among all breast cancer veterans.
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.
To represent the
concerns and interests of women and men with lymphedema
and advocate with them in the medical and research
communities, and among the general
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:
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
OUT – SPEAK OUT:
TOGETHER WE CAN MAKE THE DIFFERENCE!
Please contact us with your comments and suggestions!