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Topic: I have truncal swelling/lymphedema = anyone else?

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

Posted on: Jul 28, 2007 07:42AM

kimmymacbu wrote:

Hi Ladies - last month I went down to the lymphedema doctor, to get fitted for a sleeve, as a precaution, for a possible overseas trip this fall. My arm was only slightly enlarged, and I haven't had problems with it since I had 15 nodes removed 9/06, along with right mast., chemo, and rads which ended this past May. But what I refer to as my third boob, the big swelling under my arm pit, is indeed lymph fluid, and they seem to think that massage will help it, and are sending me to a PT who's doing the light touch thing, trying to redirect the fluid. Other nurses told me it was fat (ha ha) or normal post surgical swelling. I guess there is fluid build up on my back too.

Anyone else have this -- in checking the boards seems like most of you have arm problems...which by the way, sound like no fun at all -- sorry you are going through that. If you do have truncal swelling, does the 'massage' and redirection work? Any other suggestions? Any activities or vitamins I can take to help it?

thanks for any advice --- I always thought it was odd I was so 'fat' only on one side--

Kim B. -- western wisc. age 46, dx. 9/06, stage 3C Log in to post a reply

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Jul 28, 2007 09:35AM NPat wrote:

Kim,
Many of us have truncal LE, as well as, the limb LE. We talk about it in spurts. Treatment is the same... MLT. We don't wrap our chests but wear a variety of garments/vests/bras to keep a handle on the swelling. I have gone through the Bellisse bra which is designed for those with our problem. It just didn't fit me correctly and I am much happier with several of the Anita bras (made in Germany and available on the internet). I also wear Nancy Ganz Camisoles that I get at TJMaxx at a reasonable cost. Others love the camisole that Oprah likes.... what is the name of that, gals? Anyway, a regular bra can be used... just remember... NO wires... they block lymph... wider straps and back... especially higher under the arms where some of us get "flaps". I got my last Anita bras at Sylenes. Women's Personal Health Resource also has them and you can see the pictures. Sylenes is a discount site and some of the styles are pictureless. They are much cheaper... I think I get the Anita 5409 for $50 at Sylene's and it is ~$92 at Women's Personal Health Resouce.
Binney is our resident expert and will bop in here, I am sure with more thorough information. Avoid hot showers, sunburn, insect bites ... same precautions apply for truncal LE. You are not alone... the back also will swell and you will notice it above your bra. www.lymphnet.org will give you information on your truncal LE. I have been disappointed that the last book I got had one paragraph on it but three pages on scrotal massage... We can get LE anywere!
Thanks for posting and keep on!
pat

NPat

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Jul 28, 2007 01:08PM fd411 wrote:

I have truncal lymphedema which seems to have been brought on by radiation treatments. It caused pain, hardness, the breast feeling very hot and swelling.

Low impact sports bras in a slightly larger size help me.

I was referred to physical therapy, but kept having cancer progression get in the way and take priority with the treatment for that. It was believed that the massage would manually move the fluid and relieve the symptoms.

Just recently, I've noticed that the swelling is starting to go down and my breast isn't as hot and hard as it used to be.

The docs told me it was all probably radiation induced and would resolve itself in time. While I do notice an improvement, I honestly don't know if it's the chemo relieving some of the symptoms because I've also developed skin mets in the same area.

Ferne
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Jul 29, 2007 12:41AM neat wrote:

Hi Kim,

Sorry you are having trouble. I have truncal LE, in addition to bilateral LE. In answer to your question of what has helped others with truncal LE, the MLD massage helped me, as well as the Belisse bra. My LE is greatly affected by what I eat, too.

I typed up a list of what helped my LE in the discussion thread titled "Overcoming my LE." You might want to read it to see some other things that helped me, as well as the great additions by other women to that discussion thread.

I hope that your swelling is reduced soon!

Best wishes!
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Jul 29, 2007 07:42AM sccruiser wrote:

Hi Kim,
I have truncal LE also, as well as in hand & arm on right side. Because of the truncal, my left arm is also at risk for LE according to my LE therapist. Here's what I do to keep my LE under control (most of the time):

Water exercise for 1 - 1 1/2 hrs, 3-5 x per week. I could not "survive" without this activity. I don't have a thermostat(my definition) so have no way to cool down--don't sweat at all--so I can exercise really hard and aerobically in water, and not get heatstroke. It really keeps my swelling down. If I miss a day I really notice it. If I can't get to the water, I have a friend who keeps her hot tub at 96 degrees just for me. I only need to sit in it for about 20 minutes, and the compression in 3 feet of water works like a charm.

-Wear "Barely There" (brand name) sleeveless leotard top & to ankle leggings (also have below knees for summer wear) daily

-Wear Jovi vest & arm garments at night (hard to do in summer--sometimes only wear 3 x per week, or put on and wake up at 3 am and take off)

-Use Compupress compression pump (wear upper body jacket) once a day, usually in early evening. Others on board like the Flexitouch

-MLD daily

-I have a lot of pain with my LE, so take a number of pain drugs 2-3 times a day. Do you have pain w/truncal le?

-walk at least 30 min. and try to do 3 x per week (I walk more in cooler weather, summer is hard for me)

-gave up on bras. have gone to camisoles. buy them at Target--like the fact that their elastic is not too tight. If I wear a bra, I like Soma (Chico's) and get them on internet. They have no underwire and are really comfy. Also figured out that I can add an extension to each bra, so that on days I'm more swollen, I have more choices for hooking them up. I too have back swelling, particularly on one side. The extensions make it much less noticeable.

Hope my info helps.

grace

One must still have chaos in oneself to give birth to a dancing star

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Jul 29, 2007 02:43PM Binney4 wrote:

Hi, Kim,
So sorry you're dealing with this. Add me to the list of the truncally challenged. One thing that's important is to make sure your therapist is fully trained (at least 135 hours of specifically LE training beyond her PT or OT certification and at least a year's experience treating LE) and that she has had experience with truncal LE (not everyone has -- as you note, the arm LE is more common. Or at least it's more often correctly diagnosed...)

Underarm LE is hard to deal with because bras and camis often don't hit that spot at all. For a long time I wore custom made LE vests, but I now can use a Sassybax bra ( the long-line style) and that's working well for me. Aside from the chilling price tag, of course.

Drink plenty of water and steer away from salt. The water helps to dilute the lymph fluid, which is otherwise thick with big ol' bulky protein molecules and hard to move. There aren't any vitamins that help, but losing weight if you're overweight can really make a difference.

Exercise is good for LE, but while you're doing therapy follow your therapist's directions carefully and do ask lots and lots of questions so you learn all you need to care for yourself. Even though the swelling in your arm is minimal, your therapist should be addressing that with massage and wrapping, yes? For guidelines to help you know if you're receiving appropriate treatment, you can check out the "Treatment" Position Paper at the National Lymphedema Network web site that NPat mentioned above.

Hope you see good progress in the week ahead!

Hugs,
Binney
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Aug 3, 2007 01:30AM Lhunhen wrote:

Hi Kim,

I'm sorry your going through this. I also have truncal LE. It's very mild now but still needs looking after. I was told to drink lots of water to help the lymph fluid's flow. Good thing I like water and drink lots of it anyways.

I also get from time to time fluid in the ear on that side. It takes time to make it go away and it's annoying. MLD massage makes it better. My chiropracter also knows the pressure points in that area to help with drainage. While she is doing it I can acutally feel it draining from my ears. Strange sensation.

I hope your better soon.

Cathy
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Aug 3, 2007 12:26PM Peggins wrote:

Kim - I too have truncal LE. I keep it under control by MLD every morning, seeing my therapist once a month and wearing a solaris vest to bed and a belizze bra for anything physical. When I want to look good I wear a sassybax bra. I wear a sleeve and glove for flying and drink lots of fluids. I also bounce every morning for 5 minutes while my tea brews. It seems to help the fluid flow and warms up my arthritic joints. My case is mild and I aim to keep it that way, but getting it dx'd was not easy.
I hope your time with this devil is as easy as possible.

Cathy - I couldn't believe my eyes when you mentioned that your ear sometimes felt full. So does mine and I thought I was the only one!
When I was first was home from my mastectomy my ear was full. I thought it has something to do with the lymph system and that when the drains came out and the swelling went down so would the full ear. Not so.
My breast surgeon, plastic surgeon(I had a tissue expander and then a silicone implant), PCP, oncologist and numerous nurses had no clue. They all rejected my lymph system connection. I was sent to an ENT who said I had great hearing but had no idea about the fullness.
I also felt swollen and pain on my mast side (also ear problem side) but my PS said, "You've been through major trauma, what do you expect?"
The third time I said, "I expect comfort" and he sent me to a Lymphedema Therapist whose office was across the street from his. (I have fired him!)
We have since learned that my ear fullness is like a baromator for the truncal LE. But she has no one else in her practice with the ear thing, nor do her collegues that she has asked.
I can't believe you are out there.
Before I knew what it was it drove me bonkers. Now I know it is my body telling me to take notice.
I'm so happy you posted!
Peggy
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Aug 3, 2007 01:52PM Binney4 wrote:

Oh, wow. Weird. Add me to the list of strange ear problems, but I never associated it with the truncal LE. So now I'll watch it closely and see if the two seem to be related for me. On the surface these two things wouldn't seem to have any relationship, but with LE stranger things have happened!

Binney
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Aug 3, 2007 02:41PM myrenewal wrote:

I'm glad I saw this!! My doctors have told me I have truncal lymphedema (mild case), but my ear also has a weird fullness and sometimes slight pain and my neck under my jaw on my lumpectomy side. It never occurred to me it was caused by the lymphedema! Actually good news for once!

Sue

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Aug 4, 2007 02:00AM Lhunhen wrote:

Quote:


Cathy - I couldn't believe my eyes when you mentioned that your ear sometimes felt full. So does mine and I thought I was the only one!




I thought I was going nuts at first with this constant fullness in the ears. The doctor said no ear infection but why the fluid. Finally they said it could be from the Lymphedema.

Recently I hurt my arm/neck and a pulled muscle in the neck area really bad. It was cutting off the flow and immediatly I felt that fullness and very hard to hear out of that ear. No pain though. It's been almost 3 weeks now and it's just starting to get better and I can hear a little out of the ear.

When this happens I know I need to see the therapist for the head MLD and pressure points to help with the drainage.

I hope you all find relief also.

Cathy
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Aug 4, 2007 02:04AM Lhunhen wrote:

Binney, My massage person said that it has everything to do with LE. We had lymph nodes removed and that interupts the flow of lymph fluid on that side. She thought because I have truncl LE I might have that ear issue more than if it was in my arm only.

I also sleep on that side which does not help. I have been trying to sleep on the other side to help with that.

Cathy
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Aug 4, 2007 04:11AM Peggins wrote:

There are more of you with ear fullness. How amazing!

Someone told me that little kids with earaches learn to gently massage the area just in front of the ear. When I do that it helps the ear to drain and I get fairly rapid relief. When I'm in public and can't then continue to massage my breast and groin area to keep the lymph flowing the relief is short lived! In private I can do the MLD until my ear feels normal.

Peggy
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Aug 7, 2007 11:46AM NPat wrote:

I have a dear patient with LE on the entire left side of her body.... she had a stroke that significantly left her with left-sided paralysis. My LE therapist has seen her and she has been treated. The left side of her head is puffier! I would have never believed it unless I saw her... Adrienne, my therapist, says that strokes can do this because of lack of muscle movement that stimulates lymph flow....
pat

NPat

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Aug 16, 2007 06:37AM davisfamily70 wrote:

Wow,
What I great thread. I too have truncal LE, but I did not know what it was called, and I also have ear and jaw pain on my left side-I had chronic earaches as a child and message the area in front of my ear just as Peggins said, and it works. It is just amazing how these symptoms crop up that seem so unrelated.
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Aug 30, 2007 10:45AM 3boys4me wrote:

I think I might have truncal LE, too. I just had a lumpectomy on 8/1 and now I have a 3rd boob under my left arm. I've brought it up to my doctor, but he's not really said much - think I'll ask again when I see him next Tues and demand a response.

Do sports or compression style bras help? I discovered sassybax last year and wear them all the time, but something with more compression might be better.

** Live Well * Laugh Often * Love Much **

Dx 2/2007, IDC, 5cm, Stage IIb, Grade 2, 6/14 nodes, ER+/PR+, HER2-
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Aug 30, 2007 11:08AM burns_la wrote:

See how it pays off to keep it touch on this Board! I have truncal LE also and thought it was more rare! Like has already been said, it is just probably not diagnosed. I do the self massage in the shower daily and it keeps it mostly under control; however I am excited to read about the bras that specifically help. Guess I will FINALLY have to get rid of the underwires?

Good thread. Thanks!

Laura from Oregon. On the way to my "new normal." I will never be totally free of the worry, but will no longer be defined by it.

Dx 12/31/2003, IDC, 1cm, Stage I, Grade 1, 0/18 nodes, ER+/PR+, HER2-
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Oct 20, 2007 06:32PM, edited Oct 20, 2007 06:35PM by MusicTeacher

This is a huge hug and a great big THANK YOU to ALL of you Ladies who have responded to this thread.  You've helped dry my tears from another lousy session - my last - with my surgeon, who denies there is even such a thing as truncal lymphedema, much less that he might've done something wrong (like remove several clear lymph nodes because of a false positive surgery-lab report...). 

Frustrated, in pain, not knowing what to do - I happened on this list and started to take notes and then I took ACTION. 

Please know that EACH of these emails has helped so much.  I am now in control of my health, have fired the surgeon, am with a lymphedema clinic learning MLD and the smile is coming back on my face.  All because of you all.  THANK YOU again. 

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Oct 20, 2007 06:42PM Binney4 wrote:

Wow, MT!

Welcome to the boards here, and to our "sorority of swell". SO GLAD you're back on track to health and control. And SO SORRY you had such a rocky path. But I gotta say, your determination and courage are downright inspiring. Smile

How's the pain level now? Sure hope the MLD is making that just a fading memory.

Thanks for posting, and (((((HUGS!))))),

Binney 

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Oct 20, 2007 06:59PM glolite wrote:

I use Kinesio Taping to keep the fluid moving. It lifts the skin off the facia so the fluid can flow. Taping is the cutting edge of control of LE. If I don't have it on then my arm and chest are filled with fluid. I don't have to wear special bras or garments for my chest.All because of the Kenisio Taping. Wonderful freedom from to much stuff. The tape is light and is applied about every 4 days. Is water resistant so you can bath in it or get in a pool. 

glo

..she believed she could, so so did

Dx 4/2005, IDC, 2cm, Stage IIIa, Grade 2, 7/21 nodes, ER+/PR+, HER2-
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Oct 21, 2007 03:29PM MusicTeacher wrote:

Thanks to you both, Binney & Glo. Stayed up until 2 AM just going over all the information in this website, but the Kinesio Taping I've not investigated.  AND it makes perfect sense.  Heck, and I just ordered another $100 worth of garments... 

Tell me, Glo - do you put it on yourself?  Who taught you where to put the tape, how, etc.?  Do you do MLD with it?  Anything else?  (If you tell me just the kinesio tape only, I'm going to dance around the room!)

Thanks again, Ladies.

MT

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Oct 21, 2007 04:06PM Binney4 wrote:

Hi, MT,

Here's a Lymphnotes article on Kinesio taping for LE that covers the basics: 

http://www.lymphnotes.com/article.php/id/215/

Not every therapist does taping, but more and more seem to be adding it to their arsenal, so hopefully you can find someone to try it with you and teach you to apply it. (Some applications require a helper, so if you go to learn, take somebody helpful along!)

Sadly enough Kinesio without the other interventions is not going to work as a reason to dance. Frown

Dance anyhow!

Binney 

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Oct 22, 2007 08:35AM MusicTeacher wrote:

Well, Binney - you made me laugh outloud.  You bet I'll dance anyhow.  Thanks for your encouragement and the Kinesio tape link.  The therapists that I've seen are just out of their LE classes and have not mentioned Kinesio.  I'll bring it to their attention too.

Tell me Binney, or anyone - I have questions based on some of the comments I've seen in the Truncal LE threads. 

Someone said 'in order to work, it takes 45-60 mins. of MLD'.  Hmm. The TLE MLD taught to me takes about 30 minutes while lying down.  Then I'm told to stay horizontal for 1-2 HOURS afterward in order for it to work, morning and night.  YIKES.  This is next to impossible in the mornings especially.  And I haven't seen great results yet, and nothing is being done with my back area.

What were you all told to do?

Someone mentioned that they do their MLD in the shower.  Do you go about your day following that or lay down again? Does this work for anyone else?

During this last visit to the LE therapist, she did 'another method' with a 'V' shape between thumb and fingers to push fluid.  This is different than the slow, arching skin-moving motion she'd taught me.  Then she said I wouldn't be able to do it the way she does.  [Huh?]  How were you all taught to do this?

Enquiring minds want to know.  Laughing Thanks again, Binney!

MT

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Oct 22, 2007 11:08AM Binney4 wrote:

Yikes, for sure! You must be feeling pretty thoroughly immobilized. Gotta say I never heard of the "stay horizontal" rule. In fact, being immobile is not particularly good for LE. Once I'm done with the massage (which I confess I do mostly standing up in the shower unless I have a particular problem), I wrap or wear my garments and get going on some exercise or activity. Or you could go swimming, which is usually especially good for LE. If it's bedtime, then you wrap afterward (or wear a night garment) unless your particular brand of LE doesn't cause you grief at night, as a few women here are lucky enough to have.

Somehow I missed what the TLE stands for? Sorry! 

Here's the thing: the Lymphology Association of North America (LANA) is the licensing agency for LE therapists, but at the moment getting their seal of approval isn't mandatory in any state. (Why not? Because we haven't raised enough of a ruckus. It's going to be up to us. There--that's my oration for the day. Kiss) Their standards go like this:

1. At least 135 hours of specifically LE training beyond their PT or OT certification, from a single accredited LE school, 2/3 of those hours hands-on.

2. At least 1 full year of SUPERVISED lymphedema therapy experience.

3. Passing the LANA LE knowledge test 

From what you say, it appears your therapists may not meet those requirements, so part of your difficulty (no results yet, no attention to your back, long horizontal interludes) may be simple inexperience. You might try talking to them about that, after which you may find that the best course is to find a better-qualified therapist. You could try the Therapist Locator links at www.mylymphedema.com  My experience has been that, especially with truncal LE, the supervised experience really matters. But that's JMHO.

Not sure why you can't learn to use a "V" shape stroke yourself. Did you ask her why not? I use a couple of different strokes in different places, the "V" being one of them. There are several different schools that teach LE therapy, and sadly they don't always play well together. Some do "V"s and some do little finger thingys and others mix it up a bit. But they all agree on the direction and order of the node clearing and massage, and they all agree that the stroke is amazingly light (unless they're breaking up fibrosis first, which is a different process altogether). So if this all seems confusing to you, it's because it is. What helps to know is that all the approved schools offer a MLD routine that WORKS, and they all work about equally well. There was even some study done to test that out. But that hasn't put any dent in the belief of every therapist that their own method is the "right" one. As if we needed any further confusion added to our routine...

 Enquiring minds, yes! That's the only way to get the LE treatment we need. Be sure to pass along any LE information you gain to all the members of your health care team. Wink Smarter's better!

Keep us posted,

Binney 

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Oct 22, 2007 11:13AM Binney4 wrote:

Actually, MT, I haven't found it's possible to lie flat for an hour after an effective MLD massage. With all that lymph fluid being pushed out of the tissues, it's more a matter of making a dash for the restroom...  Embarassed
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Oct 22, 2007 12:31PM MusicTeacher wrote:

Thanks for the big grins.  NOW YOU KNOW why lying down for at least an hour after MLD was killing me!  Surprised

Thanks for even more info.  Will be back online this evening.

Hugs, MT

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Oct 22, 2007 02:46PM MusicTeacher wrote:

BTW, my therapist used 'TLE' for Truncal Lymph Edema.

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Oct 23, 2007 02:32AM Rainenz wrote:

I have mild truncal LE and have been having mld massage and using kensio tape.  I do self massage daily in the shower and use a long handled back brush to reach the back shoulder area.  This seems to be doing the trick for me.  Have already manage to resovled the LE in my hand by doing this.

Hugs Raine 

Dx 1/1997 3.5cm Medullary, Grade 3, 6/14 nodes er-/pr-, her2 -

Dx 6/2006, IDC, 3cm, Stage IIIc, Grade 3, 29/34 nodes, ER-/PR-, HER2-
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Oct 28, 2007 01:03PM sccruiser wrote:

I have truncal LE, as well as breast, hand, arm & abdominal LE. Whew.

I was told to do the MLD at least 3 times a day. Luckily when I am at work I have a private office so I can close the door and do it without others noticing. I have to make a dash to the bathroom after, as well as get myself a nice big drink of water.

At home I do it several times a day, but can also use my Lymphaprss pump to sub for the MLD.

The other thing I found very effective was getting into a pool or hot tub (I use a friend's and she is so nice--she keeps the temp at 94 degrees) for an hour. The water compression is so gentle but very effective!! I make several trips to the bathroom after my water soaks!

In the pool I take an aerobic exercise class. The movements really make a difference--often have to go to the bathroom 1/2 way through the one hour class. I think I would be in really bad shape if I couldn't get into the water. I go 6 days a week now.

grace

One must still have chaos in oneself to give birth to a dancing star

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Oct 29, 2007 11:21AM Karen66 wrote:

I have had LE in my left arm, hand, trunk, left leg and left foot since 2004.  For the most part, it stays under control by using MLD every day and wearing my arm sleeve and glove every day.  One thing I've noticed and I wonder if anyone else experiences this is....when I get emotionally upset, I get lymphedema flare ups in my neck and my back.  Does anyone else get this?  I'm trying to let things go and not to worry anymore about things, but I'm just not wired that way.

Dx 10/1/2003, DCIS, 3cm, Stage II, 1/14 nodes, ER+/PR+, HER2-Dx 1/26/2011, IDC, Stage IV, mets, ER-/PR-, HER2-
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Oct 30, 2007 12:20PM, edited Oct 30, 2007 12:23PM by sherry7

I also have been dealing with the devilish lymphedema  that was referred to earlier, that was profound, it surely is evil.  I have, hand, arm, under arm, breast, back and sometimes face and neck on my right side from my mastectomy and reconstruction.  So, as your selves, I have limb and truncal lymphedema, much to my dismay.  My profession before bc and le I was an lmt(licensed massage therapist and instructor) key word, "WAS"  LE put an end to my fast growing carreer which I truley loved.  Next thing I know, I am wearing hideous garments, mummy arms and such, spending a fortune on these things by the way without help from insurance.  Why does insurance want to ignore us?  I caught my LE fast because of my training background. I did two days of trigger point therapy on myself to make sure and then went and got diagnosed.  I still wear a sleeve daily a gauntlet glove and a compresleeve by compression design at night.  I am liking this product so far by the way, pretty comfy, just have to adjust to it like everything else.  Good luck, and keep in touch, we can all help validate each other the way no others can...love and light, sherry

let the miracles happen...

Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+

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