Shirt design for Lymphedema

proudtospin

as someone who has worked in the garment industry ...I know everyone has a HUGE wish list but some may proof not cost effective if too many options are requested....but they will have to decide and Carol can recommend the really key options

sounds like each garment is going to be unique~~

pamsc

Here is one company only offering a woman's 25% spandex shirt with nice long short sleeves.  http://www.sportsauthority.com/product/index.jsp?productId=13265385&srccode=cii_17588969&cpncode=31-144064522-2  I hesitated whether to size down but in the end didn't.

I'm new here--had a melanoma on my upper arm and a couple of sentinel nodes removed in April.  The lymphedema specialist was worried enough to order me a custom sleeve and suggest I wear compression tops. 

carol57

pamsc, welcome!!!  Sounds like you don't have LE, and you're being proactive about trying to prevent it, so good for you!  I hope you never, ever get it!  

25% spandex is great! Have you worn the shirt yet?  Looking at the photo, I think the sleeves might be a bit too long (overlap compression sleeves too much), and it looks like there might be mesh under the armpit, so less compression there.  Some compression shirt makers put mesh at the pits to help keep the area cool, but unfortunately it also means there's no compression there.  If you don't have any truncal LE that might not matter, though.  But if you're wearing a compression sleeve, be careful not to overlap it with a highly compressive shirt sleeve, because the added compression may be too much.

We are ALWAYS looking for new shirt options, so thank you so much for taking the time to post the link. Everyone's needs are a bit different, so I'll bet that this shirt will be investigated by quite a few of us, to see if it looks like it might work for our individual needs.

Carol

pamsc

Thanks for the welcome!  I have some swelling along the back of my armpit and maybe a little softness in my upper arm, so I am taking prevention very seriously.

I will report further when I receive the shirt.

carol57

pam, if you have swelling behind the armpit and maybe in that upper arm, I'm not sure we're talking prevention--does your LE therapist think you have LE already? Do you have any achy feeling, or heaviness feeling in the arm? These are symptoms of LE.  If you are already swelling, you should be getting some therapy to move the lymph along, including being taught how to do it yourself, i.e., manual lymph drainage, MLD.  Have you visited this site:  www.stepup-speakout.org ?  It's the best resource out there for those of us with or at risk of LE after breast cancer treatment. You mention melanoma but not BC (and I hope you got to skip BC), but if you're concerned about upper body/arm LE, the stepup site will be helpful to you regardless.

Carol

pamsc

It was not clear whether the therapist thought I had lymphedema already. She did teach me self massage and I am doing it most mornings. She prescribed a custom sleeve, which my insurance paid for and which I am currently wearing most of the day.

The surgeon thought that it was just swelling to be expected after the surgery that would go down in time, but he clearly isn't LE sensitive.  No achy feeling or heaviness, and I am back to swimming fairly hard twice a week with a masters team. 

I have not had BC, but melanoma (stage 1b) on my arm with SNB raises similar issues.

purple32

She did teach me self massage and I am doing it most mornings.

You might consider doing this AM and PM until you get a definite. I would also go just a  little easy in the swimming/watch for any symptoms  and do the MLD afterthe pool . (that could be your 2nd session)  Carol may be onto something here.  Just be careful.

Good Luck to you.
PS  I presume you are wearing a gauntlet with the sleeve? Hand protection is a must.

pamsc

I was going to post about not wearing a glove on the sleeve glove topic, but I haven't finished reading it yet.  I will go post there anyway, in the interest of keeping on topic: http://community.breastcancer.org/forum/64/topic/796470?page=25#post_3555569

carol57

Pam, the swimming brings up a question. Fairly hard with a masters team tells me that you're probably doing a freestyle/crawl stroke, and you're definitely swimming with great power, meaning lots of resistance against the water.  Swimming is fabulous for LE, but only to the extent that the body is in the water, getting the benefit of water pressure. High-power strokes above the water mean you're not getting pressure benefits, and you're definitely doing the equivalent of some heavy weight lifting with zillions of reps.  (And in truth, I think that to get serious pressure benefits from swimming means swimming underwater with a scuba tank; othewise we're not submerged that much. I'm a scuba diver and my water pressure training tells me that there's not much in the top five feet or so of the water.)  

My thought to you is that you were clearly quite strong in the upper body and arms  before your surgery, and I'm wondering if your return to the water has triggered your LE. Oh, by the way, I am in awe of your swimming!  

Might you consider backing off a while, and doing some formal trainer-supervised strength training, following the PAL Protocol, to bring that arm and torso back to ready-condition for hard core swimming?  You probably gasped at the thought of stopping the swimming for a while, which would be an understandable reaction, but as an observer from afar, I do think it's something for you to think about.  I think I posted to you somewhere here that I kayak, and I do it long and repetitively although it's usually not hard.  I am sure that I could never have done days on end of paddling after my snb/LE had I not already spent many months in the gym, carefully following PAL guidelines, to ready my arm for the abuse.  If you want some more PAL info, please PM me and I'll get you what you need to see what it's about.  If not familiar, PAL stands for Physical Activity and Lymphedema, the result of an 18-month controlled trial of weight lifting by women with and at risk of LE.

Carol

pamsc

I didn't take very long off--it was three weeks between the last time I swam before surgery and when I went back, going very gently the first few days.  And I'm not a competitive swimmer, I just love masters because swimming with a coach is never boring.  After surgery photos are here: http://deeplanguage.blogspot.com/2013/04/good-news.html.

I looked up lymphedema specialists and mine did not come up but one did about 30 miles away.  I suppose I need to go to that one for a second opinion.  The one I went to initially saved my husband, who had serious lymphedema in his legs as a result of Atypical Parkinson's (Multiple System Atrophy).

Journey

Hi Carol - Any updates to share?  Although it's been cooler than normal here I've had my share of swell days.  I dreamt about this shirt last night!

carol57

Journey, I missed your post last month--sorry!  I think I was kayaking that week.  While wearing my UA shirt to go along with compression sleeve and gauntlet! At least on that trip, I did not need to make a fashion statement, so the UA shirt was just fine.

Just two days ago I got an email from GoAthletics, to let me know that they had not forgotten us.  They are working on getting a fabric that has more compression than their standard shirt material, and that's taking a while.  I do believe they are good folks and will continue to work on this for us.

Carol

Binney4

Wow! Very nice, Carol! Fabric is a crucial consideration, as anyone who's tried several brands can attest. Good for them for making the effort to research this so carefully. Much as I want to see what they come up with, I sure do want them to take their time and get it right. Thanks for the update,
Binney

Journey

Very encouraging that they are still in contact with you Carol.  Thank you for the update!

Journey

Bump

carol57

Hey there, Journey,

This has been on my mind lately, too. I haven't heard from Go Athletics for a while. Last I heard from them, they apologized for not being in touch and assured me that it's still a project that interests them. Thanks for bumping this, and I'll send my contact at Go an email tomorrow to gently nudge and ask if their interest in the LE-friendly shirt is still alive.

Carol

Journey

Hi Carol!  Hope all is well.  I appreciate all you have done trying to get something going.  Not holding out too much hope for GA but maybe they will surprise us one day!  In the mean time I thought it would be nice to drag this back up towards to top just to see if anyone has found something new in the market place since we first addressed this.  One can always hope!

carol57

It is soooooo frustrating! I'm in an UnderArmour T shirt nearly every day, because it just feels so much better than a bra and I benefit from the armpit compression. But we struck out hugely in getting any help from UA on giving us wardrobe-friendly necklines, so I guess I'm resigned to hiding the stupid thing under high-necked clothing. Oh well...at least with winter arriving, that's not such a challenge.

What do they say about good intentions paving the way...I do believe the Go Athletics folks are sincere in their interest in helping, but apparently there just aren't enough of us to demonstrate a robust market.

hugz4u

I presented our case To NZ-423 who was on the boards yesterday. She is from Brightlife and I asked if she could find something like a underarmour compression tee for us. I didn't mention that we want a certain neckline, etc though. I hope she pms me and says that they may find some compression tees. I requested colored gloves and she said that they now have juzo expert in colors. I asked for more black gloves. Will anyone out there make our dreams come true. We are willing to fork over the money gladly for a tee that works.

KS1

A while back I talked to Nancy at BrightLife about bra-alternatives. She was very helpful and did a lot of research, but came up empty. These days my trunk issues are doing fabulously. I attribute this to sleeping on a wedge pillow with a 20-30 degree angle (measured from head to hip) and never wearing a bra or sleeveless cami (wearing nothing is better than wearing a compression cami).

That said, it would be nice to have a bra so I don't have to hide under a scarf and vest. Has anyone tried this Design Veronique bra:

http://www.lymphedemaproducts.com/products/design-veronique-arm-sleeve-bra.html#2066

If I get it, I would cut the bra's sleeves short so the just overlap with the top of my compression sleeve. KS1

carol57

Funny how we're all different, and which probably explains a lot of the trial-and-error nature of finding solutions that work. I do pretty well in compression camis that have bra cups built in (shapewear products), and I would LOVE to have what KS1 linked to, only with it extended to below the waist, like a bra-cami with sleeves.

The price on that item is pretty steep, but the concept is great. If you try it, KS1, I hope you'll give us a review.

KS1

Hi Carol -- Have you tried Design Veronique's bolero? It comes in long and short sleeves, and it might work for you. I am pretty sure I wrote a review of it a while back (summer 2012?). I've only worn it a handful of times ... it has an insane number of eye/hook closures (front and back) and I have problem with my hands. Also, I am short waisted and it runs a bit long. My main problem is my side/armpit so I am hoping that something shorter (with fewer hooks!) that has sleeves would work.

http://www.lymphedemaproducts.com/products/design-veronique-short-arm-sleeve-bolero.html

http://www.lymphedemaproducts.com/products/design-veronique-long-arm-sleeve-bolero.html

KS1

carol57

KS1, I looked at the photo and I don't think it would work for me. I'm insanely long-waisted, so it would be too short --mid midriff instead of at or below the waist, I think. Also I am looking for something with bra cups built in, like the one you linked to in your earlier post. I guess the good news is that there are options 'out here' and if we keep looking, maybe we'll eventually find a good solution for each of us. Thanks for posting!!

Carol

sleevelady

I'be tried a few slimming type camisoles but end up feeling suffocated. Crop type top without high neckline or logo and with short sleeves to meet top of sleeve would be best for me. And cool and breathable! Would be lovely to have something like a crop T-shirt that didn't dig in under arms The specialized garments do look very expensive though. Thanks for trying.

carol57

Good news! Our friends at Go Athletics now have a compression shirt pattern shaped for women (their products to date have been men's only). They have procured a compression fabric that I think will meet our needs, and I've been wearing the prototype for two days now and find it works great. It's a V neck, with no beacon-like logo that we get on UA shirts, and it's cut long to stay put. The sleeves are similar to men's UA compression shirts, so they don't cut like the UA women's cap sleeves.

Go needs to grade the pattern to a range of sizes now, so the next step is to send me samples in the various sizes that others can try on for fit.  So, I need volunteers who can email me their home addresses, so I can mail the shirts to you for evaluation.  It is likely that Go will ask volunteers to use a marker to draw on the samples to indicate where a change is needed, and to write down comments about the sizing and then send the shirts back to them--or to me, as intermediary, if you want to remain anonymous to the company.  Sizes will be small, medium, large and extra large.  After reading some posts in another thread here, I'll ask if an extra small might be graded as well. PM me if you are interested in helping with the sizing.

 I've also been in touch with a catalog retailer of LE products who might be interested in offering a wider range of products for truncal LE, such as shirts and camis and the like.  They asked me my opinion on how big the market is for such products, and what 'we' would be willing to pay.  Tough, tough questions!  These products should be covered by insurance in a perfect world, but we all know that the LE world is not perfect and they will not be covered.  I'm pretty sure that what we'd be willing/able to pay out of pocket will vary widely, but I think it's a fair question.  Go Athletics has never asked me about price, but I think they would benefit from the same information.

So, I created a survey that we can complete absolutely anonymously, using Survey Monkey.  Here's a link to the survey:

https://www.surveymonkey.com/s/2V93CHR

I want to stress that I have absolutely zero financial interest in any of the above, and I will have no clue who answers the survey.  Also, Go Athletics has been working on a shirt design for us for a while, and they have not asked any questions about pricing, they have just decided to see what they can work up for us and they're taking the risk that there will be enough customers to justify the effort.  I will share the survey results with them, with the catalog retailer that I'm in touch with, and with anyone else or any company that wants to see what 'we' say about our compression garment needs.  The survey is about more than price--it asks what we like about current options, what needs to be changed, etc.  It also asks how many truncal compression garments we typically buy in a year. 

I'm trying my best to find a way to gather information that will help companies that wish to help us, without violating any ethical standard of letting garment makers promote products in this forum. I've posted about Go Athletic's efforts in past months, so that's been no secret all along.  I've asked the mods here several times to tell me in advance if posting a link to my survey violates terms of service, but they've never given me an answer one way or the other.  As a forum many of us mounted a letter-writing campaign to UnderArmour a year or so back, and one of our members even got so far as to fill out a market research form they provided.  And that led to nada, probably because they're a huge company and our collective shirt needs are a drop in their world-wide garment bucket.  So I HOPE that no one misinterprets this effort to be inappropriately helping only one company that wishes to find ways to help us.  The need is currently not being met...we legitimately need the help with better garments. If only one company has agreed to help, I sure hope we can maximize their effort by helping with sizing and market research support.

If you'd like to take the survey, just click.  Send the link to anyone you know who might also take it.  If you'd like to try a sample and help with sizing the Go shirts, please PM me.  I don't know how many they'll need, but first step is to find out how many might be interested in helping.

Tamiami

Thank you Carol for keeping up on this!!  I would love to try a shirt, but not sure if I'd be a good person for it right now.  I just had my implants removed 10 days ago, and will have them out for at least 3 months.  Considering trying a PAP flap after that.  I'm in the middle of an LE flair right now...upper arm, shoulder blade (truncal) and breast, so I wish I had that shirt right now!  I will PM you my address if you think I'd be a good fit...if not, I understand.

Tami

Binney4

Carol, BRAVA! Many thanks to Go, and to anyone else who wants to help us out. YES!!!

Ladies, a chance for our collective voices to be heard--go for it!

For those of you with "only" arm LE, think of this as a way to reduce risk of breast/chest LE when traveling or exercising, so your input would be valuable too.

Thank you!
Binney

carol57

Binney, I hope you'll repost the link in other forums where I know you generously participate with your amazing LE expertise.  I posted in NLN's 'Inspire' forum, but nowhere else as yet.

carol57

Quick question I should have put in the survey and has come up now--what color would you purchase if you could buy only one shirt?  Choices are white, navy, or black.  I need to recommend a color for a sample shirt run.

Journey

Carol I will send you another pm with my size and address.  I am beyond thrilled that we are at this stage now. As for how much I'd pay - heck I'd skip a car payment at this point...just kidding, but when you are uncomfortable and swelling it's a different ballgame than how much am I willing to pay for a T-shirt at the mall.