New Website--SteupUp-SpeakOut.Org

OneBadBoob

Binney, Otter, Kira and myself have been working on a new website where we have tried to organize all of the information on lymphedema into easily accessable categories.

   

The StepUp-SpeakOut Website is Now Up and Running!

Visit Our New Website!  --We hope you will enjoy it and find it chocked full of information on lymphedema.

It is still a work in progress, but we have much information up, much more coming, and wanted to share with you all.

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:

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, the political arena, and among the general public.

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.

 

Jane - Dance like no one is watching!

Dx 7/7/2007, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-

SpunkyGirl

BRAVO!  Jane, this is such an awesome idea.  Thank you all for taking the time to put this together.  I, for one, am especially excited that this site is now available to women facing all these issues for the first time.

Hugs
Bobbie

lionessdoe

This is so needed! Thank you Binney, Otter, Kira, & Jane! You guys are absolutley awesome! Gonna go check it out! We have our own place on the world wide web!

Thank you! Thank you! Thank You!

BoobsinaBox

Jane, Kira, Otter, and Binney,

Thank you all for this new site with so much information in one, easy-to-access place!  I do not yet have LE, but that is mostly thanks to your good information on bc.org and not to my surgeon, who told me I had nothing to worry about (and who told me he hadn't removed any lymph nodes in my bilat "except maybe one or two in the breast tissue itself"... so imagine my outrage a year later when the next surgeon I saw, after I fired the first one, gave me my path report and it said "axillary node dissection" 12 nodes on left and 9 on right!).  So I came here to see what to do next, got a sleeve and glove for flying and other situations, and began to take better care of myself.  I would have been lost in a world of anger if not for all of you, and this new site will add to my ability to move forward in a healthy way. 

I recently had a colonoscopy and was dreading the arguments I'd had last year with an anesthesiologist minutes before surgery about not using my arms (He scorned my information, until I told him that unless he could guarantee he would have LE for me, if it occurred, he wasn't using my arms!)  This doctor and his staff were prepared by my phone call ahead of time, and there was no argument at all.  We shouldn't have to advocate our own health care with health care providers, but thanks to you all, I now can do it, and I am much more confident! 

Thank you from a bc sister who wishes you the very best in life!

Dawn

lionessdoe

Wow! It is not only full of info, support and resources, it is such a beautiful site! So well done!!! This is wonderful! What an enormous accomplishment for all of us to benefit from in every way imaginable!

Anonymous

WOW... this is fabulous ... a fantastic resource for anyone who wants to know more about LE - or for anyone living with LE ...   thank you for pulling this all together and for inspiring others !! I'll spread the word of this site on twitter. 

Doreen  

jinky

Wow what a surprise!!!!! This will help so many people with le. This must have taken months to do. Lots of info there.

Congratulations girls!!!!!!

le hugs jinky 

Bahons2

This a brilliant site - well done everyone who has worked so hard on it!

footprintsangel

Very Good! I love all the info and caring there, God bless you all, Debbie

yellowrose

In the words of a good friend, "You Rock!"  Thanks for the LE site and the support on the these boards, as well as PMs.  I just don't know where I'd be without all the help I've received from my sisters here at bc.org. 

shrink

Great site!  I have a question though.  I believe I read that the wrappings should stay on for 23 of 24 hours.  Is that correct?  I've been leaving mine on for about 8 hours.  Is that enough?  If I had them on all day, I'd need a new wardrobe because most of the right sleeves in my clothes would be too small.

OneBadBoob

 We are happy you like the site!

We have added a "printer friendly" link to the  

WHAT WE NEED OUR DOCTORS AND NURSES TO DO AND KNOW ABOUT LYMPHEDEMA

 page that we can print out and take with us to give us some "ammunition" to advocate for ourselves if our doctors or health care providers argue with us.

I will leave the wrapping question for Binney,  Shrink.

Erica3681

Congratulations on a great new site! I've already emailed my PT about it--she's a nationally-known PT who works almost exclusively with breast cancer patients and speaks at conferences around the country. She's always looking for good sources of information. I've also put links to your site on my BreastFree.org website, in the Helpful Links section and in the Special Post-Mastectomy Issues section. 

Barbara 

OneBadBoob

Thanks Barbara--

We listed your site on our resources page also.

ravdeb

Although I've told this to Binney..just wanted to add my appreciation for a site so beautifully put together and so informative. Thank you so much. You are all terrific! And so motivated!

Binney4

Thanks, all, for all the kind comments (and the links, Barbara!)

Shrink, during a Therapy Intensive (when you're initially working with a therapist several days a week and getting a Manual Lymph Drainage massage and wrapping at each visit) the protocol is to stay wrapped all day except for shower, followed by massage, lotioning and re-wrapping. The therapy typically lasts two or more weeks (depending on the extent and responsiveness of the LE). The all-day wrapping allows the lymph vessels to have help pumping lymph fluid, because they provide extra pressure on the skin surface for the muscles to move against -- which is the primary way that lymph fluid is pumped through the vessels. After that period of therapy, when the swelling is as reduced as it can be, you're fitted for compression garments to wear during the day, and wrapping usually continues at night (though some women order special night garments instead, and others can go some nights without wrapping).

If that's not what your therapy is like, you might want to ask why not. The real question, though, is whether or not what you're doing is working to bring the swelling down and keep it that way.

Clothes over a wrapped arm can be a problem, especially in winter when jackets and coats make it awkward and drafty. A zipper-front sweatshirt works for me, but it doesn't get all that cold here. You can wear jackets and coats without putting your arm in the sleeve, but of course your activities are limited (to say the least!) Raglan sleeve blouses work well, or just full-ish sleeves. I have a few items I can wear, but a lot don't work with a wrapped arm. Stretchy fabrics do, as long as they're not so tight they bind anywhere. The awkwardness of wrapping 23/7 only lasts a few weeks, but it sure does seem like forever. When I was done with my therapy there were a couple of shirts I'd worn over and over that I never wanted to see again!

Nightgowns -- you can find them with big full sleeves, but not easily. Or cut off the cuff if there's fullness in the sleeve but not in the cuff. I wore a t-shirt and 'jama bottoms during therapy, but now that I have to wear a full night compression vest and two sleeves, all I need to add is the bottoms. (Only, since I used to wear nightgown, not pajamas, that's been a big adjustment.)  

What have the rest of you done about the clothes-over-wrapping issue?

Binney

Marple

I wear sweatshirts.......I stretch the heck out of the wrists.  And thankfully dh never wore his sweaters.  I now do.  Not very fashionable......but warm.  LE fashion in the winter is a challenge.  In the summer I just wore sleeveless blouses.  Winter is a whole other issue.  And dressing up while wrapped.  Well sheesh, how sexy is that?   I'd love to hear how others deal with cold weather fashions.

Hugs

Oh and since I'm still dealing with hot flashes my winter bed attire is the same as my summer bed attire.

shrink

I've been getting massage 2x week for several months.  The swelling has slooooowly gone down and my arm is definitely softer.  I'll have to ask why I wasn't told to keep wrapped the rest of the day and night. I can do the massage myself now although not as well as the LE lady. I also wasn't told about lotion except not to use it during massage.  I'd be lost in a maze of tape, bandages, foam, sleeves, etc. without Binney, the rest of you.

Binney4

Hi, Shrink,

You might want to copy off the National Lymphedema Network position paper called "Treatment" and take it with you to the therapist. It's the standard treatment protocol for LE and might serve as a discussion starting point with your therapist. It's here:

www.lymphnet.org

Let us know what you discover!
Binney

AmryAnn47

Jane, Kira, Otter, and Binney,

Thank you, thank you, thank you!

I am not on line much anymore, so I was thrilled to find your beautiful, well researched and well organized website.  Wish that I had access to all this wonderful info and support when I began this journey 4 years ago--what a difference it would have made!  This will be an excellent resource for all seeking info and living with the cursed LE.

Thanks again,

tessu

Thank you for gathering together such a wealth of helpful LE information. Your site and the women here have given me hope <

carol57

tessu, thank you for posting here, so we can all be reminded of the amazing work that these women did for all of our benefit. Stepup-speakout has become the go-to resource for so many of us. I'm so grateful!

hugz4u

That site is amazing and so are the girls that developed it