Truncal Lymphedema

Here is the link to StepUp-SpeakOut http://www.stepup-speakout.org/

People have all different symptoms but a sure sign is bra strap marks.

Sure is!  Hugz is right- 'indents ' suddenly wewe apparant in places I never ever had them prior to LE.  I am amazed that so called competent ( Harvard trained BS)  drs . do not recognize this as a tell tale sign.

You say you had " some MLD" .  Do you do this daily ?  This is suggested ( usually twice a day) as a part of your daily regimen as well as an evaluation  (and possibly therapy)  by a  qualified LE therapist.

Please do visit the website link  Marple posted and follow hugz advice on the compression cami.

Good Luck to you!

Hello ladies

My oncologist told me he thought I had truncal edema in October 2013, 7 months after having a mastectomy. Is this the same as truncal lymphadema?

In brief, I was getting swelling on my right side (mastectomy side) that seemed to build up and build up and then dissipate. Looking back, I think this was happening since after the mastectomy. I got a huge seroma and had to have it aspirated. The nurse wanted to do it a second time but it was so painful I refused!

But in case it gives hope...the good news is...it is so much better now! No treatment. Just healing.

It still hurts at the shoulder blade to raise my right arm but otherwise it is OK.

Hope things improve for everyone else too.

Best wishes

Alice

My cancer surgeon said "you can't have lymphedema! I only removed 6 lymphnodes!" She then checked my arms and then admitted it. This was after my oncologist and the lymphedema therapist confirmed it. I have swelling under the arm, on the side and above the breast as well as the arm. At the end of the day if I don't wear the camisoles that compresses, it is very full and noticable along with being painful. I do better on long work days when I wear my sleave and my camisole. But with the latest arm surgery the camisole is difficult to get on and off, so I don't always wear it.

Sorry to hear you  have joined the "swell" group but we can help you. You can control and get the swelling down somewhat but you have LE for good. Usually it is less in the morn and more by night. Sounds like you have breast/trunkal/arm LE.

A extra tight shaper that comes up high into the armpit and far down the waist or a extra tight mens UNDERAMOUR compression tee will help you and may lessen the pain. Underarmour must day COMPRESSION

But....You need to see a well qualified Lymhedema therapist who can drain that fluid and teach you how to self massage it out.  See the website our lovely smart girls her wrote to help you with questions about LE. stepup-speakout.org for all your need including finding a therapist.

Do let us know how it is going and please do not ignore this because the swelling will become worse. Good news is that you can get a handle on it. 

Hopefully our LE experts here will advise you soon. Keep us posted and do ask questions. Getting educated on LE is the best defense.

Hi all,i have been reading your comments and i think my symptoms are what you are discribing.pain under armpit,on the chest wall and upper back.im not on swelling as i have gained weight since my treatment i had chemotherapy,and radiotherapy which was finished nearly two years ago.could this be what i have or could it be due to the radiotherapy?

I posted some of this under the "Shorter Radiation Protocol" topic. Anyway, I did 15 days of Rads ending late May. Skin wasn't too bad and normal mammogram recently. But, I DO NOT RECOMMEND unless you live far away from a treatment center. Most ROs in the Denver area won't do it. I asked my husband's RO why. (My husband was diagnosed with prostate cancer 2 weeks after my breast CA diagnosis. Fun times!) He said he will do it if pressured, but there are more side-effects. I have had 3 problems most likely from radiation, but the lymphedema (LE) was likely also due removal of 4 lymph nodes for SNB. My LE was primarily truncal, but has now moved down to mid forearm. It's very mild, mostly tightness rather than significant swelling, I also developed 2 MINOR issues: TIETZE Syndrome (inflamed rib cartilage just below affected breast) and MONDOR'S Disease, (subcutaneous thrombophlebitis) extending from below breast to belly button. I believe the last 2 would not be related to the surgery, but who knows?

TRUNCAL LYMPHEDEMA is what I started with and thanks to advice here and at http://www.stepup-speakout.org/ , I've found the right garments for me at this stage of my issues. Bras hurt my rib. Camisoles and tank tops cut into my axillary and truncal LE areas. So, after morning massage, I don (love that word), a men's UNDER ARMOUR v-neck short sleeve shirt from the Underarmour web site. Over that goes the old version of the women's REEBOK EASYTONE short sleeve shirt (with curved tape areas and still available on eBay). The Easytone sleeve is too short to stay put and thus 2 shirts. Also, if my swell spots bother my skin, I can put them between the shirts. Easytone seems to provide a lot more compression than the UA. Next I don my compression sleeve with top band over bottom of both sleeves. Add Swell Spot to underarm and/or lateral chest and back. Then gauntlet and I'm ready for my exercise regimen. Whew!!

I am a pudgy apple-shape 5'7" and 170 lb and wear a men's medium UA shirt and an XL women's Reebok Easytone shirt. I find that long sleeve button up shirts work best over all this as it just looks like you have a V-neck under it. Turtlenecks mock and otherwise work too! Hopefully by summer I can wear all this stuff ONLY when exercising/traveling by air/doing strenuous activities, etc.

It certainly seems like it could impede flow and I know this a concern at the wrist when compression sleeve overlaps the gauntlet or glove. However, the shirt sleeves aren't very tight on my arm and I find it more comfortable to have the shirts under the compression sleeve band. Maybe this is due to the higher compression pressure at the wrist that gradually decreases as you move up toward the shoulder.

Never heard of it, but I have wondered if naturalists have any suggestions for this stuff.  It can't hurt, right?  How long after your surgery were you experiencing swelling, FireKracker?

FireKracker- I would like to hear more about how you are using the Castor Oil.  Did you make a Pack?  How long did you leave it on?  How often did you use it? What brand did you buy & where did you get it?   Thanks

I used the castor oil in the morning and evening

I leave it on like any other cream that u would use for massage

I thing a small bottle is around six bucks

I leave it on till I shower and start all over again

Right now I'm good so I do it only once a day

I bought it in a reg.pharmacy but the brand I got is called good neighbor pharmaceutical

I bet Every pharmacy carries it.

Try it,u will like it..and if u don't let me no why please..

Gentle strokes just like any other stuff u use

Good luck and keep me posted

Mnmbeck I bought some last night ( I am in MN too)...Maybe we got it at the same store!  LOL...I went to the Vitamin Shoppe in CR.

I am some how going to make a 'patch'...They say to make it with Flannel...Which I dont have so I will see what I have.  I am goign to hold it on with Saran wrap.

Could it be that the "rubbing" is what helped reduce the flare? Sorta like self-mld? I'm trying to think of a physiologic reason why castor oil applied to the skin would affect the lymph system and can't come up with anything (not that the lymph system makes any logical sense…!), but gentle rubbing would definitely have an effect. The Ayurvedic practitioners in India use assorted oils and herbs, both on the skin and orally, to treat all manner of swelling--a tradition with no particular known effectiveness, but certainly an example of "natural" interventions being tried since ancient times. Some of us have been researching the methods used in other countries in both Asia and Latin America--really interesting.

Do you know what caused your flare? 

At any rate, I'm so glad it has been vanquished--good for you!

Gentle hugs,
Binney

I was waiting for u to show up Binney.

You no I have tried almost everything

Somehow this worked and ur answer made sense.

Yes I do no what caused my flair up

I peeled about 3-4 lbs. of potatoes..duh.

I still use it even tho I don't have any problems

Just a tip...if I'm not going anywhere that I have to get dressed up I put the oil on,then a short sleeve tee shirt,then a bra and then my clothes..

If I have to go out I don't do it in the daytime but I do this tx at nite for sleep