Compression tank top?
I have had 2 mastectomies, one 20 months ago, and 1 five weeks ago. I just was seem by an occupational therapist trained in lymphedema, and I was surprised to learn I have lymphedema in the 20 month mastectomy side.
So aside from MLD and scar massage, she wants me to wear a compression tank with swell spots to sleep.
my lymphedema is in my forearm, 2 fingers...and I am always swollen in my armpit. (It is soft though and goes up and down, not hard and fixed)
I don't hear women talking about wearing tank top compression to sleep with swell spots. The store is a speciality store, but I don't trust their knowledge.
Can anyone help, tell me if this is the right path for me? It is mild lymphedema, but I sure don't want it to get worse.
Comments
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Hello! I'm learning as I go that there are many forms of home care. When I read "I don't trust them" that's your senses kicking in....
Can you go elsewhere? Have you checked the other threads? -
Crystal, there are lots of options for breast/chest compression. I need compression at night but wear a night vest by Solaris or JoviPak (I've used both). They're quilted with directional stitching to help steer the lymph fluid out of the area, and they're stuffed with chipped foam (like a swell spot). They're reasonably comfortable and last about two years. I'm not sure a tank would be real comfortable. Mine tend to end up wrapped around my waist even during the day, so I don't know how well they'd stay in place at night.
On the other hand, if by "compression tank" you mean something like an Underarmor tank top, that probably wouldn't shift and bind as you flop around in your sleep. But how you'd keep Swell Spots in place with a tank I don't know.
JoviPak has a couple of new "swell spots" that are for armpit swelling. One of them might work for you, but again, I don't know how you'd keep it in place. Did they say anything about that?
Maybe ask about ordering night garments -- a sleeve/glove and vest. Anyplace you'd get lymphedema garments from would have to be a "specialty store," but if this one can't fit you for a night garment to address your needs, you need to find one that can. My insurance only covered one place, and it didn't handle all the LE products I needed, so I had to get their approval for a place that did. Took some time and a lot of stupid phone calls, but I now have a great fitter who knows her business.
Keep us posted, and please tell us how we can help.
Gentle hugs,
Binney -
I sleep in UnderArmor compression tanks or T-shirts one size to small and it really helps my truncal/underarm LE.
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Trisha, yes, excellent idea. Would it hold a Swell Spot in place if one was needed, do you think?
Binney -
Thank you for responding...I am thinking because of the small number of responses, this is not a "usual" thing for lymphedema, so I am thinking another crazy hair-brained small town idea for the breast cancer woman.
And my lymphedema is less that a 1, so I think that means it is just beginning, not significant.
In my neck of the woods, no one takes Lymphedema seriously, maybe this is how many medical professionals view it? But yet I work with my hands, I am an artist, so taking good care of them is essential.
ok, I will see what the fitter says Monday...
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I think it would. It's pretty snug. Sometimes I even turn them inside out if I am having a bad flare.
I think that truncal LE is just not as known. Mine was misdiagnosed for years, because my hand and forearm don't swell.
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Crystal, "less than stage 1" is the very best time to intervene, so by all means go after this now. Definitely not insignificant, as you so rightly surmise. And sadly, the ignorance among medical professionals is not limited to your small town. Some of our biggest cancer centers are clueless.
Do keep us posted on what you discover. Gentle hugs,
Binney -
Crystalphm, In the past I have worn a compression tank with swell spots to sleep. I will resort to this during a flare even now. During the more intensive phase of treatment, my LE therapist cut a medium density orange foam into a panel that ran from the side of my breast area, under my arm and slightly around back and down the side of my chest. The back part went up behind my arm. It was shaped like the side of a vest. Anyway, the foam provided firmer pressure, and I wore a tank a size larger just so I could fit one on each side. It was a PIA, not very comfortable, but it worked. Since the tank was larger, it didn't seem to rise up much, especially if I wore panties on outside. (such an attractive look, not!) Later on I wore the swell spots with a smaller size tank. I wore the orange foam and/or the swell spots with a tank 24/7 for four months, and I think it helped stabilize my LE. This is actually my current get-up for flying, and it does the job. I want to get the kind of vest Binney describes, but I am having to fight with my insurance to approve. The vest sounds ideal, but in the meantime at least you have a viable solution.
The torso is such a pain to deal with. The good thing about the swell spots under the tank is that not only does it provide extra pressure, but it can lift the edge of the tank away from the sensitive area while still providing compression. So, it may sound makeshift and hair brained, but my LE therapist is in the Phila area and highly trained. Sometimes a creative idea is what works best! Good luck in your quest to find a nighttime garment. -
I was diagnosed, finally, with truncal lymphedema under my right breast and axillary and side. Don't you just love how no one (BC patients and medical personnel) seems to have ever heard of this and that you're only educated about arm lymphedema?
I work in health outcomes research and finally came across medical literature about this. I knew something was wrong and physical therapists couldn't really "see" this truncal LD going on. It's not like it can be measured like in the arm. I kept complaining of fatness feeling under my arm and pain pressure in my affected breast that comes and goes. I finally was diagnosed with it when I went back to Mayo Clinic for follow up for a SL of other complications I am dealing with on top of LD.
Anyway, I've been fitted at the phy therapy center at my local hospital for various LD garments, that fortunately my insurance provides 8 pieces of LD garments per year. In addition, it pays for mastectomy camis, etc.
Before I officially got the truncal lympedema Dx, I bought cami "shapers/slimmers" at Target. I'm six months post-surgery but can't wear a bra anyway because of complications that are in my fold of my breast.
So after the offical truncal DX, the Mayo LD PT sent me to the specialty shop there. I ended up getting a compression camisole that insurance paid for. I actually like what I bought at Target better as it is prettier and more comfortable. I also got a swell spot, which I tuck into the side of it. It stays in place fairly well; however, I am thinking about sewing a small patch of velcro to camis and swell spot to keep in place.
I had SIX drains from my surgery and at the same speciality shop got two mastectomy camis that had those pouches that were velcro inside the camis that could be removed. They were great to hold all those dreaded drains. I have had complications and will be having more surgery with drains (hopefuly not six again), and am glad I held onto those mastec camis as I was going to donate them back to the store.
So give a little velcro a try to keep things in place.
I have my first flight next month since all this BC hell. I am a heart patient and have dealt with heart failure/edema in the past so when flying have worn compression socks and always did exercises for circulation and gone for walks up and down aisle. Boy, and I thought that was a hassle.
Now, I will have on my arm sleeve, hand and finger piece, compression cami, and swell spot. I am thinking about not putting the swell spot in until after I pass through security because it looks a little suspicious IMO, kind of like a gun holster shape on my side.
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PinkHeart, I do exactly that - wait to put the swell spots in after security. I opt out of the scanning and go through the pat down process, so I don't want them there and have to explain. Same thing with my sleeve and glove. I will wear the tank though. I always make sure I get through security at least an hour before my flight so I have time to "gear up" in the ladies bathroom.
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Crystalphm- I wear a compression camisole 24-7. It's made by Wearese and called the slimmer. I use a swell spot at night and it stays in place. The camisole is comfy and doesn't ride up. I bought it online. I agree with Bonnet. The best time to manage your LE is now at Stage 0.
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PinkHeart, I was wearing my sleeve & glove on a plane. The guy sitting next to me said "What are you wearing those things for?" suspiciously. I turned, looked him in the eye, said flatly: "Lymphedema from breast cancer." "Oh" he said and didn't say another word to me the rest of the flight.
Do you have a link to or remember the name of the camisole you liked at Target? I have trunkal LE too and keep trying to find something that works more than halfway and would hold a swell spot or similar in place.
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Lunakin, Target sells a compression cami, which is actually made by Spanx, called "Assets"--I tried it on, and it fit well, but has a lot of seams, but could be worn inside out. I think it sold for $20.
Kira
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Thanks Kira. I think the Assets is a lower-priced line of the Spanx stuff. Yes, how did you guess I have to wear so many underthings inside out due to the rough seams?! Anytime they do surgery on us, our skin's never the same!
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I've been on 3 flights since my surgery and have asked and been given a pre-boarding pass. It covers yourself and whomever you're traveling with. My flights have all been full & this pre-boarding allows me to select a seat that my right LE arm isn't impacted by unknowing people jabbing my arm or something that really hurts. I've found that the best place for me is the side of the plane where I can sit with my right arm at the aisle and can control having my arm pulled in by me, not by a cart of someone getting up or down. I can also choose a seat in the front of economy so I can get off easier & not be jostled with everyone pulling everything down and once again hurting my arm. It's made a huge difference.
You guys really have some great ideas for wearing LE garments. I think I'll check into some of those for myself. Thx.
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Lunakin~
The camis I bought at Target are called Self Expressions and made by Maidenform.
They do have light seams on the sides; however, when I bought a "real" compression cami at a mastectomy boutique, it too had seams. The only difference is that the straps were wider and softer so that if I also develop arm lymphedema that wider straps will probably be more comfortable.
I bought a black and white one at Target, and need to go back to get more - hope they still have the same kind because I bought them three months ago.
How did you officially get diagnosed with truncal lymphedema? I kept complaining at PT about getting a "fat" puffy feeling under my armpit and my right breast felt painful, though looking at breast and my side, you couldn't really see swelling. It's hard to measure truncal LE as you can with an arm. I don't think my PT was really aware of truncal lymphedema. I did some research and brought in pictures and a medical article to show her. I kind of diagnosed myself and then when I went to Mayo Clinic the physiatrist in LE clinic said yes I did.
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Pinkheart, I just developed this after my last chemo. I am now trying to figure out how to manage it. Were you given any specific exercises for this?
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Momine, did you develop truncal LE? Or swelling any place else?
The first thing you'd need to do is get evaluated by a qualified LE therapist, any doctor can refer you to one, and realize that quality of therapists vary, so be upfront about what they will do for you and their level of training:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
Also, here's a link to truncal LE info:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
I've been emailing a wonderful LE PhD level PT, and she finds that women often swell after/during chemo.
Please let us know how we can help, and how you're doing.
Kira
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Kira, thanks. I have a PT, but she is on vacation right now. I will see my onc on Tuesday to get an idea of what to do for the time being. I had AND on the right and the sentinel taken on the left. At first I was fine, but then I started chemo and the AND arm started to swell. Nothing drastic, but visible. I wear a sleeve and see the PT weekly.
After this last chemo, my last, I got bad inflammation of the veins and a swelling uner the arm on the left, where they only took the sentinel. It's annoying.
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Momine, there was a paper published earlier this year, and they had a risk calculator for LE, and it was only on the web for a while,and will be up after the paper is published (the mods pinned it to the top of the thread)
One of the risks for LE was having chemo in the arm in question. It's just a risk, but it's hopefully something you can avoid--but without a port, likely they use that arm with "just" the SNB.
It's annoying is putting it mildly.
If you can elevate the left arm, hydrate and maybe do some MLD on it, hopefully it will settle down.
Kira
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PinkHeart, Re: how I got a trunkal LE Dx. I puzzled for a few weeks at this non-pitting puffiness that developed from my shoulder to above the mx scar. My cancer clinic PT looked at it and thought I was just getting more pectoral muscle development from exercise(!) Then after looking at all the info on the SUSO site and this forum, I basically dx'd myself and told the PT I thought it was trunkal LE. She then agreed with me. So did my BS when I saw her later. We have to be our own advocates.
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