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No Bra = No Lymphedema

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24

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  • sher
    sher Member Posts: 76
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    I wear the Still You Mastectomy Camisole Tank Top, with a bit of an adjustment, especially for the summer.   I cut off the outer long cami part which leaves me with a pocketed cami bra that works great with foam or poly filled forms.  Too bad someone doesn't make a cami bra like my adjusted model, but I've searched high and low to no avail.  Maybe I should write to the company and suggest it?  They do make a cami bra, but it is quite different than the type in the cami tank and not nearly as comfortable. 

    Just curious, OneBadBoob, how does the Maidenform Control It Cami work with breast forms, or do you wear it form free?

  • sher
    sher Member Posts: 76
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    Just curious, OneBadBoob, how does the Maidenform Control It cami work with breast forms, or do you go form free?

  • OneBadBoob
    OneBadBoob Member Posts: 63
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    Sher, I had reconstruction so I don't use a form.

    There are patterns for "form pockets" you can sew into cami's and also ready made pockets you can sew into them.

    Also, someone had mentioned to me that they used velcro--one side on soft form and one side in the cami itself that worked well.

    Anyone else tried this?

  • binney4
    binney4 Member Posts: 1,466
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    Hi, Jane,

    Here's a web address for buying ready-made sew-in pockets. They can be done easily by hand if you don't have a machine, or ask a needle-friendly relative or friend to sew one in for you, or any seamstress can pull it off in no time.

     http://www.tlcdirect.org/subcategory/AmericanCancerSocietySewInBraPockets.html?

    If you want to make your own pattern for any bra, cami or swim suit, here are the instructions I've used for adapting mine (Sassybax TorsoTrim):

    http://www.threadsmagazine.com/item/5079/adapt-a-bra-to-accommodate-a-prosthesis

    This looks like a production, but if you take it one step at a time it's actually very simple to follow. Fits like a dream, too!

    Sher, by all means write to the company and explain our needs. I just wrote to Jodee recently and haven't heard back yet, but I hope to jog them into at least thinking about it. I wrote to Sassybax a long time ago, and they'd like to create a mastectomy cami for us, but they were a new company and not yet able to branch out that way. So I think writing actually helps -- go for it!

    Hope that helps!
    Binney

  • Erica
    Erica Member Posts: 237
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    Sher and Binney,

    I just had a conversation with one of the owners of Still You yesterday, asking about the very thing you're describing--a bra finished more like the tank top camisole. When I first had my surgery (2006), the Still You bras were finished like the cami, but they changed the styling and now finish the bra with elastic edging all around, which is uncomfortable for me and irritates the skin under my arm.

    The owner listened to my comments with interest, but said some women like the newer style better. Still, if you weighed in also, perhaps they would consider offering a bra in the prior style as well as the newer style. 

    But meanwhile, Sher, THANKS for your idea about simply removing the outer part of the camisole. I've thought about doing that but worried that the fabric would unravel. After you cut away the cami part, do you finish it off in any way? The Still You Tank Top is the mainstay of my wardrobe. I wear it with my Amoena Leisure foam forms and they stay right in place and really look quite natural. Of course if anyone hugs me they're not squishy like silicone (or my own former breasts Cry).

    For more huggable occasions I wear my Silique Comfort-Lites with a Barely There Crop Top bra or a Maidenform bralette.

    Earlier this year, I discovered that the key to finally getting the chronic fluid pocket on my chest to dissipate was to stop wearing regular bras. I wore only the cami or my crop top bra. Lo and behold, the fluid is now gone! So I really think we're onto something here. Plus, it's soooo much more comfortable not wearing bras whose bands feel too tight around my chest (even when they're the right size).

    Barbara

  • binney4
    binney4 Member Posts: 1,466
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    Let's all do it!

    Here's their web site:

    http://stillyoufashions.stores.yahoo.net/index.html

    And their contact email is:

    info@StillYouFashions.com

    Interesting to see how much of a voice we might have if we all "sing" together!Kiss
    Binney

  • sher
    sher Member Posts: 76
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    Jane, I'm sure the velcro would work very well.  When I had my masts, I had those camisoles that came with the puffy forms with velcro on the front.  But I found that the forms could be used in other cami's or bras and the velco kind of stuck to the fabric even without the corresponding or opposite piece of velco.  Thanks for reminding me!

    Thank you Binney for posting the links!  I've bookmarked the ones for pockets and will write to Still You requesting a "cami" bra patterened after their camisole tank.  I've also purchased the Still You Bra  (don't like it either) - actually had to orderand exchange 3 different times because of size problems when they were changing from one style to another, but never thought of telling them about my adjustments.

    Barbara, when removing the outer part of the camisole from the bra part, I just cut very closely and carefully right under the edging/binding and the material has never unraveled.  And I only have 2, so they've been machine washed and dried lots and hold up just fine!  You can barely see where the outer material is cut away and the only thing that makes it not quite perfect is that the side seams are on the outside. 

  • Erica
    Erica Member Posts: 237
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    Thanks, Sher.

    Just a note that actually the size of the cut-away cami seems less bulky than the old bra style. If you check out the Still You website, the picture they have is still of the original-style bra, so you can see what it looked like. It sounds from your post as if you may have actually seen the original. So, if you contact them it might be good to tell them what you've been doing and see if they could construct a bra that just consists of the underpart of the cami, with the seams on the inside.

  • lvtwoqlt
    lvtwoqlt Member Posts: 765
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    Since I had my bilat with recon, I don't like wearing bras, they are too binding and my new boobs don't quite fit in them. I wear primarily cami's but without the shelf bra, I tried sports bras but they were too tight across the boobs and too tight in the band area. My sister and I are considering creating a type of cami bra for me (we both sew) because having the extra layer under my tops can be stiffling in the NC humidity and heat in the summer months.

    I will also contact Still You about thinking about creating the bra you suggested Barbara.

    Sheila

  • binney4
    binney4 Member Posts: 1,466
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    Hmmm. For those of us who need some truncal compression, the seams on the inside are irritating. Since we're ordering exactly what we want here Wink, I'm opting for those hidden seams that aren't outside or inside but are smooth on both sides. Sheila, what are they called?Undecided
    Binney
  • lvtwoqlt
    lvtwoqlt Member Posts: 765
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    binney, are you referring to the seam like the seams on blue jeans? it is a flat felt seam, sew the seam together, then fold over, turning raw edge under and top stitch the folded edge of the seam allowance flat to the body of the garment. Or if serged edge, you don't need to turn the edge under, just fold over and stitch.

    Sheila

  • binney4
    binney4 Member Posts: 1,466
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    Thanks, Sheila! I knew you'd know.Smile
    Binney
  • dlb823
    dlb823 Member Posts: 2,701
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    I am so glad I stumbled across this thread just now!  I had a uni-mx w/Diep recon, ALND, chemo & rads, and to date no real LE to speak of, thank goodness.  However, now that it's extremely hot here this summer, I have had some mild but slightly painful swelling and puffiness on my surgery side, mostly below my armpit and in my hand, especially after I walk a signficant distance (my choice of exercise).  I have not worn a bra since my surgery, and haven't felt the need to.  However, just today, in response to my question about the swelling and puffiness, my PCP told me to be sure to wear a tight sports bra when I exercise.  I thought that was probably good advice, but after reading this thread, I'm wondering if it's contrary to what you all are saying, and maybe not wearing one has kept me from having more problems than I do???  Would the no bra theory work any differently for periods when you're strenuously exercising and sweating.  Or are those precisely the times we're most at risk???    Deanna

  • t9jorda
    t9jorda Member Posts: 23
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    Deanna... what you are experiencing is a mild form of LE... so now is the time you really must be careful to keep it at the "mild" stage.... so you need to think smart.  When walking and you start to get the "signs", get that arm "UP" around heart level, hold onto the edge of jacket or rest it on your chest.  Get a compression sleeve to wear for exercising .... and as for a bra... no... don't go there... what you should look for is an exercise top that has compression throughout it... some yoga tops are like that... you still want good support for your "girls"...  Have a look at something like this....http://www.danskin.com/tank-7658.html#danskin  or  this type of workout wear......http://www.nike.com/nikeos/p/nikewomen/en_US/clothing?ll=en_US&ct=US&pid=205091&cid=1&pgid=205092&p=PDP&  .
     
     I hope these ideas help... go shopping girlfriend... buy something you love! TJ
  • binney4
    binney4 Member Posts: 1,466
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    Wow, Deanna!

    What a bunch of good questions! And I'd say you're right that a tight sports bra could cause you more grief than you want.

    Let me take a step further back, though. Before any swelling is visible or measurable, we can have as much as 30% more fluid in our tissues than is normal. This is called "subclinical" or Stage 0 lymphedema, and it's real lymphedema. As the "Stage 0" suggests, lymphedema is staged, just like bc is. Without prompt treatment it will progress through the stages, which will make treatment longer, more difficult, and less manageable. The stages of lymphedema are not about how big the swelling is (which is what we'd naturally think), but about internal tissue damage from stagnant lymph, increasing risk of serious systemic infection, skin changes, and fibosis formation that gradually increases the damage to the lymph system. In other words, having a little lymphedema is sort of like being a little pregnant.

    It's sure not rare for our doctors not to know much about lymphedema: it's not their specialty; it's not routinely taught in our medical schools; until recent years the research has been scarce -- lots of reasons. The medical professionals whose specialty it is are the well-trained lymphedema therapists (who are unfortunately too few and too little recognized).

    All of which means we have to advocate for ourselves where lymphedema is concerned. Starting with getting a referral from any member of your healthcare team to a well-qualified lymphedema therapist for evaluation and therapy, and to learn how to manage the self-care aspects of it. Here's information about finding a qualified therapist near you:

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Until you can see one, you might find a leotard or a sports shirt (like UnderArmour) useful, preferably in a size smaller than you'd normally wear, and inside out so the seams don't irritate your skin. An Isotoner therapeutic glove can help control the hand puffiness until you can get help from a therapist. Stay really well hydrated (helps dilute the lymph fluid), do some deep abdominal breathing throughout the day as you think of it (stimulates the main lymph vessel in our bodies), and elevate your arm (supported) as much as possible. Also, from time to time raise your arm above your head and slowly pump your hand open and closed a few times.

    Deanna, sure hope that information isn't alarming -- it's not meant to be. Lymphedema is something you can definitely take charge of, and keeping it in control is entirely possible. You've caught it early, and that's great.Smile It'll be good!

    Gentle hugs,
    Binney

  • dlb823
    dlb823 Member Posts: 2,701
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    TJ & Binney ~  Thank you so much.  I didn't know any of that stuff about what LE really is or the future problems it can create.  And it's funny, but when I called my rad onc's office a few days ago to ask for a referral to an LE therapist (because they're in the same hospital complex building, and I thought it made sense), they were very quick to suggest that I show it to my PCP or onc.  I felt like RT didn't want to be involved or take any responsibility for the problem.  And I'm not even sure the local therapist is as qualified as they make her sound, but I'll check that link, Binney.  If she's not, I'll just go back to UCLA, where I know they take this area of bc tx very seriously.  Thanks a lot!    Deanna

  • SammieKay
    SammieKay Member Posts: 247
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    I am so glad I found this thread.  I have had some mild lymphedema in my upper arm.  I did not know about lymphedema in the body trunk until I read about it on this website.  The therapist who taught me some massage never mentioned it.  My swelling is mostly in the upper arm, breast and trunk.   I had looked at garments online, but found them expensive.  I found the Asset garment at Target for 20 dollars.  It works beautifully for me.  It is quit warm in this 100 + degree Texas weather.

    I will try the Underarmour shirts in the winter.  I do have a sleeve and a glove.

    I appreciate the information and intend to look for a lymphedema specialist soon.  Binney, the information you shared is very useful to me and am glad to know even mild lymphedema should be addressed.  I hope my insurance company will allow me to go to a lymphedema clinic in Houston. 

    Anyone from Houston recommend a clinic in Houston?

    Thanks to all for sharing information.  Sammie Kay

  • shrink
    shrink Member Posts: 131
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    Prior to my diagnosis and surgery (bi-lat), I bought about 10 camisole tops with shelf bras and thin, adjustable straps.  Does anyone know how I can convert them to be wearable now?  The breast forms move around if they're the lighter ones and the silicone forms just plain fall out.  Thanks. I do feel better when I don't wear those mastectomy bras and my arm seems less swollen at the end of the day.

  • binney4
    binney4 Member Posts: 1,466
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    Hi, Shrink!

    Haven't "seen" you around for awhile. Hope all's well with you (except for the slipping prostheses, anyway!)

    Here are a few suggestions for converting your camis to useable items. Hope they help!

    The Cancer Society on-line store has "shoulder cushions" that attach to your bra straps to keep the narrow straps from cutting into your shoulder:
    http://www.tlcdirect.org/products/sku-8083__dept-14.html

    And it has easy sew-in prosthesis pockets that come with instructions for hand-stitching them in (or get a "crafty" friend to do it for you):
    http://www.tlcdirect.org/products/sku-7576__dept-16.html

    Or the instructions for designing your own sew-in pockets in any item (bra, cami, swimsuit) are on-line here:
    http://www.threadsmagazine.com/item/5079/adapt-a-bra-to-accommodate-a-prosthesis

    Be well!
    Binney

  • shrink
    shrink Member Posts: 131
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    Thanks, once again, Binney.  I just got my scan results (bone and CT) last week and there is NED!  I've been working and wanting to focus on non-cancer stuff.  But, everytime it gets humid, there goes my arm.  It doesn't hurt but I hate that it never really goes away.  I still do massage every other day but have given up on the wrapping.  My arm does get smaller but it goes right back to where it was anyway.  Do you think it's critical to continue wrapping for a very long time?  It's been about at least 6 months for me. The LE therapist thought I was Stage I when she saw me last and there's been very little change since then.

  • t9jorda
    t9jorda Member Posts: 23
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    Shrink..... I am going to offer my opinion for your consideration.... sometimes with healing you really have to listen to your own heart and say "Is what I am doing working for me?" and if the answer is no... ask yourself "What will work for me?".  You may find those answers very very informative, and each of us has our own path to follow.
     
    When I decided to "treat" my arm by listening to my heart vs. the therapist I was very successful...... and I choose to wear a compression sleeve during the day for several months, not have any other interventions, and change the type of breast coverage I wore to just a cami with no tension points/underwire , and I did a routine of gentle neck rolls, arms stretches before bed (5 minutes) for several months during a "healing period"....
     
    My idea was that:
    a) I just needed to let things heal on their own
    b) I needed to ensure no lymph fluid was being restricted in my trunk area,
    c) and I needed to ensure my back/neck muscles were relaxed at bedtime.
     
    By doing those things daily, calmly and simply, I have achieved success.  
     
    I also stopped all alcoholic drinks until I got my arm back to normal.  The alcohol contains histamines, and this actually will cause my arm to swell, wine has more histamines then a light beer and I get a very different response in my arm depending on what I drink (which is now very little, maybe one drink per week).  I also took Reactine (allergy med) for several months daily during my "recovery period" which I think helped with the response (and reduced the histamines). 
     
    I think the therapists offer us wonderful support, but ultimately we have to pay really close attention to our own bodies response to food, activity, etc... to assist in our own personal recovery.
     
    I hope this helps... best wishes. tj 
  • binney4
    binney4 Member Posts: 1,466
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    Love that guy, NED! Congrats, shrink, and dance on!Kiss

    Shrink, I'm with you on being bummed that this never goes away. Every so often that realization hits all over again and I have a melt-down. Happened last time not too long ago when I was in a dressing room trying on some of those flowy, feminine blouses that hark back to the free-wheeling 60s. I was thinking graceful and free-spirit, but the mirror was saying that the stupid sleeves were all wrong and the compression bra looked silly peeking out the top. (Fortunately I had my daughter with me, who never asks me to explain my bad moments and just fishes in her purse for a kleenex -- love that lady!)

    Anyhow, I'm wandering here. You asked if it was critical to wrap all the time. By which I assume you mean is it critical to keep your arm as reduced as possible. The way I look at it, whatever works to keep your LE in control, as long as it doesn't harm you, is what you should do, not some set of rituals that someone prescribed but that don't seem to do anything to control the swelling. If the wrapping controls the LE, and nothing else does, then I guess that qualifies as critical. If swimming five nights a week works just as well and it's a lot more fun, then do that.

    Obviously, what works for most of us (and has been adequately researched to back it up) is Complete Decongestive Therapy, which involves wrapping (at least for the intensive phase) and other compression, daily massage, exercise, and careful skin care. The aim is to reduce the swelling, maintain the shape and size of the arm, improve the function and health of the lymph sytem, and prevent infection that can worsen the condition. Some of those are more effective than others for each of us, on an individual basis. And for some of us those goals can be met even without, say, daily garments or night wrapping. But the point is the GOALS, not so much the techniques. Our therapists, if they're good ones, can be our best resource for divising acceptable ways to keep our LE in check and also get on with our lives with the least amount of fuss and limitation.

    Things change, and we have to pay attention, because what was working well for a time may stop working and we need to re-evaluate our coping plan. It's always in flux. We have to keep on paying attention. That's a challenge, but in our better moments it can at least be an interesting challenge, and for sure we can be proud of ourselves when we rise to meet it.

    But probably that's not what you're asking at all. If what you're asking is, what will happen if we don't do all we can to control our LE, that's another matter. The most serious risks are infection and progression. Infection is obvious, and controlling the LE can limit our risk (though not eliminate it). But without good control the LE progresses through its stages. They aren't (as we might expect) about the size of our arms, but about the internal damage that results from the presence of stagnant, protein-rich lymph. Our tissues don't "like" excess protein and react to it with both inflammation and the laying down of fibrosis and fat tissue beneath the skin. This in turn leads to further blockage and damage to the lymph system and the immune response. Obviously not good. 

    But LE care is hard, and at times incredibly discouraging. And having to find our own way to get continued decent care because the medical community is unaware of what we're dealing with is truly daunting.  In the end we each make up our own minds what good LE control is worth to us, and what kind of compromises we're willing to make. What's critical for you may not be critical for me, and vice versa.

    I'm still rambling, I guess. Is any of that what you were asking? Your arm is worth taking great care of, Shrink, because YOU are worth taking great care of. I sure wish this were easier.

    Be well!
    Binney

  • shrink
    shrink Member Posts: 131
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    Thanks, Ladies, for your feedback.  I feel better about doing what works rather than be a slave to a ritual which doesn't help much.

  • mthomp2020
    mthomp2020 Member Posts: 12
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    Shrink, I had a number of the shelf-bra cami's prior to my surgery as well.  I had a single mx, not a bi-lat.  I found that I can pin my Amoena l26 leisure form inside of the bra shelf.  The velcro suggestion is a good one, too.  I'm another one that finds that the bra bands can get very uncomfortable under my arm.  Even the elastic of the cami shelf bras can sometimes bother me.  Even before my mx I found bras uncomfortable, now even more so.  I think that if I'd had a bi-lat mx, I'd be going flat and loving it! 

    I've never had any issues with my arm, but I still get puffy under my arm 2 years out from surgery.  My surgeon told me that I would always have some puffiness because of the surgery.  It seems to happen afer wearing a bra for several hours, which I'm sure blocks the flow of fluid from the area. 

  • Unknown
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    Hi Ladies... I am new to this post (had a lumpectomy, chemo, rads, Arimidex) and while I don't have lymphedema (hopefully it will never happen), I was very interested in the idea of no bra = reduction in lymphedema swelling.  I'm thinking (hoping) that perhaps if I don't wear a bra (except when I run) that this might help me prevent lymphedema. 

    Have a question...right now I have found some nipple covers, they peel off and stick on over your nipples, which I use when I wear my cami...are there any cami's out there that are "heavier" around the boob area so that there isn't an issue with nipples "peaking through".  Since I work in an office of men, it's just not appropriate for the nipples to be sticking out.  

    Thanks for any feedback...

    Carol 

  • Linda31
    Linda31 Member Posts: 2
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    Hi everyone,

    I'm so pleased I just stumbled onto this site!  I'm 31 and had a mastectomy and 13 lymph nodes removed in February of this year and am constantly worried about Lymphedema (I especially don't want it for my wedding day next April).  My upper arm constantly aches, so I do the exercises suggested by the Hospital physio but I'm very interested in other preventative measures I can take. It's hard to find any professionals in this field.  I've been wearing a normal bra with gel inserts since my mast. but the underwire cuts into the small pocket of fluid at the wound site so based on what I have read here I'm keen to try the cami idea.

    I want to start exercising again, I'm assuming that weights are a no-no, what about cycling classes?  Are we meant to avoid all situations where our body heats up?  Does anyone know what cardiovascular type exercise we can do with minimal risk?  Thank u.

  • binney4
    binney4 Member Posts: 1,466
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    Hello, Linda, and welcome!

    Huge congratulations on your up-coming marriage, too. I just love good news!Smile

    Ditching the underwire is a great start to minimizing your lymphedema risk, but there are lots of other simple life-style adjustments you can make that will also ease the risk. Here are a couple of websites with risk reduction information:

    http://www.lymphnet.org  (see the Position Papers on Risk Reduction, Exercise, and Air Travel)

    http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

    Exercise is good for the lymph system, because the "pump" for that system is the motion of our muscles as they push against the lymph vessels. Rather than there being any specific lists of activities you can or can't do, it's important to start any exercise very slowly and work up gradually, paying close attention to the way your arm feels. Stop at once if your arm feels stained, achy, full, or just "strange." Elevate your arm, stay well hydrated, take some deep abdominal breaths -- and wait to try that activity again the next day, backing off a bit and going even slower. Weights are not necessarily a no-no, especially if you were using them before your diagnosis, but you'll want to start at the lowest weight and work back up with care and vigilance. (The risk remains for life, so there won't be a time later on when you can stress your arms the way you used to.)

    Heat is troublesome, so yes, doing everything you can to avoid raising your core temperature is important.

    Since being active and swell-free is so important to you, your very best bet is to get a referral from any member of your medical team to a well-qualified lymphedema therapist. S/he will take baseline measurements for future reference, give you personalized risk reduction tips, teach you a gentle lymph massage you can use prophylactically, and fit you for a compression sleeve and glove you can wear for travel and exercise. Not every physio has been trained adequately in lymphedema management, so you'll need to make sure of that before seeing one for lymphedema information. Here's information about how to find a well-trained one near you:

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Onward!Smile (Carefully, of course!)
    Binney

  • Linda31
    Linda31 Member Posts: 2
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    Hi Binney,

    Thanks so much for such a caring and informative response!  I'm going to check out those websites right now!

  • CherylG711
    CherylG711 Member Posts: 1
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    Hi Linda31,

    I have lymphedema and I do water aerobics.  The water keeps you cool (no overheating, except for hot flashes Yell) .  Initially I would go one day a week, making sure I didn't over do it in class and now I am up to four days a week (class is one hour).  We run, do sprints, stretching....all kinds of fun exercise.

    Cheryl

  • Sunshine1958
    Sunshine1958 Member Posts: 1
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    PurpleMe...

    You mentioned that you've been using those peel-off nipple covers under your cami, and I used to use those as well.  Then I found something that works so much better and your nipples NEVER show through.  You need to get some Silicone Gel Petals - these are the ones that I have:

    http://www.lingeriesolutions.com/ultimate-silicone-gel-petals-with-travel-case.html

    I buy them for $10 at Target, and I only wish I'd found them sooner!! 

    Hope that helps!

    Sunshine Laughing