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Topic: Bra Question

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: May 19, 2006 06:12PM

LizFL wrote:

I had a mastectomy of right breast, followed by chemo and radiation. Prior to radiation I had full arm movement and no swelling (except after surgery..which went away). Right after I completed rads I had swelling under my arm. Was sent to LE clinic for treatment. LE therapist advised not to wear a bra. She did not suggest a compression bra. I purchased two tank tops with pockets and two camisoles with pockets. Unfortunately, now I am very lopsided. My natural breast and the prosthesis never seem to want to line up properly. I have tried all sorts of ways to get the things to look right, but it is frustrating. My insurance won't cover a new prosthesis until July (one year after my first one). I talked with the woman at the mastectomy boutique where I purchased my first prosthesis and bras and I'm hoping she will have some ideas when I go in to be fitted for a new prosthesis. I also bought a few breast forms over the internet to try different ways of resolving this problem. I am also trying different kinds of clothing to try to get the look I want (boob alignment). Most of the swelling is relieved by massage, but it tends to swell a lot when I spend a lot of time at the computer which is a big part of my job. I live in Florida and hate wearing the sleeve and long sleeved blouses to try to hide it a bit. I am just getting so down about all this hassle. I went through all the treatments and everything else with a fairly positive attitude, but this LE thing is a real bear. I HATE IT! Everytime I feel the swelling increase I think about cancer and it depresses me. Somehow I feel if I can solve the problem of being able to dress decently without checking the position of my boobs every five minutes that I would feel a lot better. I tend to wear my sleeve when I am doing a lot of work on the computer or when the swelling goes up even though I am supposed to wear it every day. It is just so hot and itchy that it makes me miserable. Since I am NED after being diagnosed with a very agressive grade III cancer at stage IIIC, borderline IV, I feel very grateful to be alive and doing well except for this d#&@ LE.

Any suggestions or ideas are welcome. I don't know why this bothers me so much. I'm sure no one even cares if my boobs are even, but it irritates the heck out of me. On a bad day my arm just starts feeling useless, heavy and tired and I get pains across my chest and in the swollen area and some numbness in my upper arm. One of the nurses at my rad/onc's office (was there for follow up yesterday) has LE and she suggested I do the massage twice a day instead of once. I am going to try that to see if it helps. It really affects my whole mood for the day depending on the amount of swelling. Although the LE therapist didn't call it truncal LE, from research I gather that is what I have. I am going to discuss it further with my onc at my next visit or go back to the LE clinic if necessary.

Sorry for the long post, but it's taken me a while to even get over the shock that I got this much less discuss it, and now it's all coming out.

Liz Log in to post a reply

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May 20, 2006 07:16AM Binney4 wrote:

Hi, Liz,
Welcome, and I'm really sorry you have to join us on this LE board. I hear you on the shock and distress (frustration, despair, rage, grief, fury, sorrow, stunner, YUCK!) The initial blow is the worst, but we all go on coping with these emotions over and over, so you're not alone and we're definitely here for you.

But on the practical side, there are more comfortable solutions to your problem than you've found so far. It takes some trial and error. Here are a few pointers from earlier posts on this board:

Yes, massage a couple of times a day should help improve your situation. If you're short time (or motivation!) the most important steps in the massage are clearing the nodes in neck and groin and then massaging the chest/side/back area. Some of us also clear the neck and groin before taking a shower or bath, and then use the soaping, rinsing, drying, and lotioning as 4 mini-massages by stroking gently, always in the right order and direction. (Does any of that make sense?)

Here's a web site where they'll help you find a bra that might be right for you: www.womanspersonalhealth.com . Don't hesitate to call the number on their homepage and speak to Barbara -- she'll help you find what you need. Some of us with chest/breast LE use bras that have wide straps, sides and bottom bands for extra coverage and no binding. There's a thread a little further down on this board by Kimmytoo called "Compression bras" that will give you lots of suggestions of what's out there. NPat has a post on that thread that lists the bra style numbers that she uses. These come with prosthesis pockets that keep your prosthesis from wandering.

Some of us have found sleeves and gloves by Bio-Concepts helpful. Their customer service is good, their prices are competitive, and their fabrics come in 30 or so colors so you don't look so much like an ER escapee. They're a small outfit, though, so a lot of fitter/therapists don't know about them. If you're interested you can call them or have your therapist call. Web address is: bio-con.com and the contact person there is Lari-Ann.

Living in the Arizona desert I can empathize with the heat issue. You can occasionally wet down your sleeve to cool your entire arm. Pat it dry with a towel and it won't drip on anything. Just make sure you don't stay wet too long (or wet it down over and over), as that might encourage fungus -- not good!

I have to say that the problem of not being comfortable with the way you look is probably the hardest part of this for me. Makes me want to hide out. I can't wear a bra at all because of the chest LE pain, and it's very hard to feel presentable. It's also way too easy to feel pitiable, especially when I'm out shopping and seeing all the things I can't wear. Even the ones I would never have worn before make me sad because I've lost the freedom to CHOOSE. So you're right -- it's a bear. Big, ugly, rotten, persistent, destructive bear.

And just like dealing with bears in the wild, information and planning ahead helps with LE. Takes awhile to work out what garments and routines work best for you, but it's well worth the effort when you can take back control of your life and your feelings.

Hang in there! ((((((Hugs))))) to you!
Binney
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May 20, 2006 10:08AM LizFL wrote:

Binney, thanks so much for the warm welcome, advice and sympathy. I have been lurking on this board for a while and gathering information.

I am feeling a lot less self-pity today. My swelling has gone down and that always improves my mood. When it swells a lot like it did yesterday it just gets me in a panic and so yucky! I do my massage in the shower because that makes me feel like I am relaxing instead of doing a chore. My therapist gave me written instructions with diagrams (guess she's used to dealing with patients with chemo brain). I have a Juzo sleeve and glove which I just got in March. I went shopping today and almost forgot I had it on...that is a first! It is a sad feeling to look at all the great clothes that I can't wear! I was quite content with my prosthesis and bras until this LE came along.

I am going to wait until I go to the boutique where I got my first prosthesis before I buy any more "stuff". It is a small shop run by two very nice ladies who see you by appointment only. They are very well versed in what insurance covers. I was anxious when I went for the pros, but they made me feel real comfortable. I am hoping they will have some good ideas as to what might work for me.

I have a light denim jacket that is like my security blanket that I wear sometimes even when it's 80 degrees...makes me feel like no one can tell that anything is wrong!

I just get myself into a real state when I have a lot of swelling...makes me feel like my arm could fall off at any time even though I know that is silly.

I'm glad I finally posted here...just didn't want to face the fact that the LE is permanent. I kept hoping it was a mistake and it would go away.

Thanks again for your response...I've read so many of your posts that I feel like I know you! You are so kind to help everyone here and make them feel better.

Hugs back at you!
Liz
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May 20, 2006 03:16PM NPat wrote:

Liz,
Welcome fellow Floridian! I ditto everything Binney has said. I am very happy with my Anita bras that I purchased from the www.womanspersonalhealth.com site The owner, Barbara is a lovely person and helped me select bras that fit me better than the Bellisse.. even though my insurance didn't reimburse me adequately because the Rx didn't say "thoracic vest" instead of bra. You have to have your verbage right!

I am a BioConcepts fan also. Binney, told me about them and I find the fabric lighter weight, better wearing and more comfortable than the Juzo. I use BioHorizons as the DME company that handles the order. TRICARE only operates in a bureaucratic manner... Heaven forbid if you could purchase from the manufacturer... It might save the taxpayers some money!!! Sorry, just venting!

Liz, try wearing a tank top and one of those light, loosely crocheted tops with long sleeves. It would be feminine and cooler in this FL heat. I also wear short sleeved cotton knit shells and tie the arms of a matching cartigan around my shoulders. It doesn't fully cover the sleeve but does take the emphasis off the darn thing and the set looks neat with a nice pair of slacks or skirt. I wear a lot of 3/4 sleeved tops. They make the sleeve a bit less noticeable. However, after awhile, I began wear sleeveless shells, because comfort reigns... I just give an informative response about LE when I get the... "Oh, where can I get one of those (gloves) for my carpal tunnel?"

You may feel as though you stand out with the LE garments because most of those with LE aren't being treated and SHOULD be wearing garments. We actually are the lucky ones.

Please take care. Sorry you joined us but the gals on this board are the best!

Pat
NPat
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May 20, 2006 03:53PM LizFL wrote:

The crocheted tops are a good idea Pat. I have a couple of short sleeved ones like that that are cooler than the sheer type longsleeved tops I have been wearing and they do help camouflage my wandering boob. I bought some pocketed tank tops and camisoles from TLC to wear in place of a bra. I think if I get a lighter prosthesis it won't be moving around in the pockets as much. Now it just sinks to the lowest point! I think they have some that can attach to the camisole with velcro...at least I hope so. The place that I am going to for the prosthesis does carry Anita bras, so I'll check into that. If I find one that works, you will both be my new BEST friends!

If the link below works...it shows the tanks and camisoles. No one has asked me about the sleeve yet...but I have been wearing blazers or long sleeved tops. With the real hot season coming, I'm just dreading it. I saw some of those crocheted tops when I was shopping today...maybe I will go back tomorrow to buy some.

I went to the website that Binney posted, but there is no pricing that I saw on the sleeves. What do they cost...I would like to have a spare anyway. What is a DME?

http://www.tlcdirect.org/subcategory/dept-15.html

Thanks for the help ladies...I am feeling hopeful now that there will be a way to fix all this so that I can be comfortable and still look decent!

Liz
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May 21, 2006 07:36AM Lhunhen wrote:

Liz, Just wondering if you have tried the wigs from the TLC site and what you thought of them? Anyone here tried them?

Cathy
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May 21, 2006 11:03AM LizFL wrote:

Cathy,

No I haven't bought from there, but have from Paulayoung.com.

Initially I purchased two wigs from a local source. Tried them while I still had my hair to help match color, style etc. Before my hair started coming out I had it cut very short and wore the wigs a few times just to see how I would feel. Once I lost my hair I went on a wig buying spree. I had ordered a very inexpensive one online from Paula Young and got a lot of compliments on it. After that, I kept buying ones that were on sale. I rarely wore the more expensive ones I initially purchased. I have no idea now why I ended up buying so many wigs...but it made me feel good at the time. I grew enough hair to go "topless" in March. My hair is growing slowly, but it is finally feeling like a hairdo...even got a slight trim of the scraggly parts a few weeks ago!

The Paula Young ones are quite nice for the price. The final sale ones are not returnable, but others are. Found the ordering and delivery process to be quite good.

Originally I was going to order a wig from TLC but heard the quality wasn't that good...heard the same about Paula Young....but since the first one I bought was $19 I figured I wasn't risking much!

You might try going to a local wig store to try some on and get an idea of size, color and style. If you have a color or style that you are interested in, let me know and if I have one like it I would be glad to send it on!

Liz
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May 21, 2006 11:16AM LizFL wrote:

Cathy,

Forgot to add...check with your insurance for wig coverage. Mine covered the first one I bought. If your insurance covers it you can buy a more expensive one and then buy some of the Paula Young ones for fun. I work in a small office and everyone knew my situation...so it was ok to be a blonde one day and a redhead the next!

Liz

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