please need advice truncal lymphedema

Zohra,

You need to find a certified lymphedema therapist.  It will either be an occupational therapist or physical therapist that has additional training and is certified either through Norton School of Lymphatics or Academy of Lymphatic Studies. Going sooner than later is key in treating LE.

Good luck

Nothing works better for me than a compression top and intense enough exercise that brings on deep breathing.  Adding a bounce to the exercise is even better.  

My LE flared during radiation.  I bounced 5 - 10 minutes on a trampoline with a training bar and this always brought it back under control.  At the time I couldn't wear a compression garment.  Now I run in good weather, use the trampoline in the winter during bad and always wear a compression top.

If I couldn't exercise, I'd use the deep breathing techniques outlined in this link.  

http://www.stepup-speakout.org/other_treatments_f...

Susan, your last sentence is so true! It's amazing how much shopping is required... It would be funny if it weren't so darn expensive!

It's interesting you said your truncal may be moving into your arm... I used to be able to wear a compression bra without a sleeve (I've has serious issues finding one that works), but with time I've found if I try to compress my trunk without my arm, I feel like I can feel fluid backing up into it.

if the le is in the chest , wear ease tee or slimmer is nice.

Turtlelady I hope you are wrapping with short stretch bandages as instructed by a certified LE therapist. Actual ace bandages have too much stretch and can make things worse.

Turtlelady, I, too, could not stand any jiggling. I would hold onto my bad boob when walking or riding in a car. A PET scan (done for a different reason) showed a 6cm seroma at my lumpectomy site. (Someone described hers as like a waterbed.) It is dissipating and I can now walk two miles a day. I read that it is best to just let it dissolve as needle aspiration can introduce infection. Of course, I just sat in my recliner for over a month.

Susan, I am up 20 pounds since dx. Hate it! The Genie bra works for me. Yes, it rolls up on the bottom, but the shoulder straps are just long enough for my long torso. I keep the padding in for extra support.

Did anyone have a bladder problem after a lymph drainage massage? I have only had one 1/2 hour session and I drink plenty of water, but I felt like I was getting a bladder infection the next day. WBC count was up so Dr. put me on Cipro and Pyridium.

Sweethope, or anyone else that may know, is it the massage that actually caused the bladder infection? I've never heard of that happening. Kind of scary. I've always heard it's mostly ecoli that causes those. It somehow gets into the urethra. That's why they tell you to urinate before and after sex and to wipe front to back and to take showers instead of tub baths, etc. But LE massage putting you at risk is new to me. Sweethope, hope you're feeling better. I've only had a couple of UTI's before and they're painful!

Also I've been having pain/burning and tightness on my LE side for awhile that seems worse with deep breaths and also in the car. I've been thinking the worst like rib or lung mets! I see my Onc next month for my three month checkup and I'm going to tell him. Hoping and praying it's just my LE. It sucks but it would obviously be better than mets!

Sweethope I did not have any urinary issues during chemo. I wasn't told to get a squirt bottle or anything either. I did and still use Charmin wet wipes however. I'm addicted to those now! LOL!! Too much can cause irritation though. But even though we are careful about cleaning and stuff our bodies just get "off" sometimes and infections creep up. I wasn't thinking that you we're unsanitary so I hope you don't think I thought of you that way. I just thought it was interesting, for lack of a better word, that you got the UTI the day after your massage. If you hear anything like if that could be a factor please let us know. The flu stuff going around is making me nervous now because it's a dangerous strain! Hospitals are being bombarded from what I hear. YIKES!!

My Onc appointment is February 9th. I told my PCP about it two weeks ago and she said to mention it to the Onc. He is very much against scans though and it seems most are. I consider what I'm having a symptom though! So I will ask him. You are correct it is strange for what we wish for! We're like horray for IBS, menopause, or arthritis! Haha! I never thought I'd be having these "issues" at 38!!! UGH!