Truncal lymphedema

Mommyathome, truncal LE is sure possible.  Here's a link to a site that explains it, including symptoms and treatment: http://stepup-speakout.org/breast_chest_trunckal_...

Be sure to explore the rest of the stepup site, because you'll find an unbelievable wealth of excellent information on all things regarding lymphedema. 

To find out if your symptoms are from LE, it's important to get a professional evaluation from someone who specializes in lymphedema evaluation and treatment.  Here's how to find a qualified person (and any of your care team can make a referral: http://stepup-speakout.org/Finding_a_Qualified_Ly...

And if the bs and ps don't seem to have a clue about lymphedema (not that rare, regrettably), you can print this and give it to them: http://stepup-speakout.org/essential%20informat%2...

In the meantime, you may find it helpful to try wearing something that provides a lot of compression to your trunk.  A shapewear camisole might work, or you can find a compression T shirt made by UnderArmour, in many sporting goods stores.  They make them in long and short sleeve versions. If you want a short-sleeve shirt, we generally find that the men's versions work better, because the women's short-sleeve shirts have cap sleeves that tend to cut into the axilla.  The general guideline is to get a size smaller than you usually would wear (even smaller if using a men's size), and wear it inside out so the seams don't bug your sensitive areas.

Swelling from not sitting right...that's a new one and a pretty poor response to your symptoms. Good luck, and do post more questions here.  Lots of us have truncal LE!

Mommyathome, one good study that I know of showed that early swelling can be diagnosed as LE but turn out to be just extended post-surgical swelling, especially if the patient had taxane-based chemo.  But other studies show that treating early swelling with compression as soon as possible can keep LE from progressing.  So, I guess it's a pick-your-study choice, and you're not the first person who's posted here to say that the surgeons don't consider LE during the first year. 

I can tell you that I was aware of my LE within a few months of my surgery and had it diagnosed at about four months.  I started with compression then and I have a very mild case of it now.  I've never had to wrap, and I control my truncal LE with compression garments.  Rarely do I need to do manual lymph drainage (a very light-touch massage we learn from our LE therapists), although in the beginning I was doing it religiously.  My experience is that I started working on it early, and my LE improved and has stayed mild ever since (knock wood).  Maybe that's just a coincidence, and it was going to retreat anyway, but I have a hard time believing that.

Some women here have had trouble with tissue expanders causing some swelling, and when they got their exchanges things improved.  Studies (there's one for every topic) suggest that getting immediate recon like you did lowers your LE risk, and I saw one study that suggested implants are associated with better LE risk reduction than the flap surgeries. Maybe you've got something going on with the TEs and the PT can help you figure that out.  But I'd say to keep LE in mind and don't be shy about pushing back to ask for a formal evaluation from a qualified LE therapist.

Mommy - Another truncal LE person here.  I second Carol's advice to go over Step Up Speak Out website (SUSO) to learn all you can about LE.  Knowledge is power.  LE can present itself far earlier than a year, and with young children at home you want to be pro-active so that if you have LE, you catch it early when management is easier.  Interesting that your mom has LE - we've discussed in various LE threads before how many of us have other relatives with LE.  I would think that's an extra warning sign for you. 

Like Carol, I was also aware of my LE symptoms early on, but my surgeon dismissed my concerns.  Unfortunately, too many surgeons are not well-trained about LE and tend to dismiss patient's concerns.  As Carol says, keep pushing.  And you really should get an evaluation by a qualified lymphedema therapist.  Unfortunately, PTs who are not aware or trained in LE management can inadvertently trigger LE or make LE worse simply because they are not aware of the signs and symptoms.  By reading through the SUSO site, you'll be aware of what to look for as your therapy progresses.  You also have a head start on knowledge given your mom's experiences. 

Five weeks out is still early, so your swelling could well be normal post-surgical swelling.  I hope so.  But it's always good to be aware of LE so you can recognize the signs and symptoms. 

It would be interesting to know if your swelling is less after you get up and increases throughout the day.

It would be best to try the smaller size compression cami/tee trick and see if your pain minimizes, It may be a good indicator as to what is going on. With truncal LE I feel tingling, fullness, stinging slightly like a bee, a feeling like I have a rubbery boiled egg stuck at the back of my armpit, but it vanishes with the  UNDERAMOUR men's compression tee or cami.

Stick to your guns until you are satisfied. My doc laughed at me and said that I would NEVER get LE. You might not but it is wise to be educated.

I find it interesting that you had surgery jan 29 but the pain didn't set in until 2-3 weeks later. That tells me you were doing ok and then something changed.  Your so smart to be proactive.I hope you don't have to join our swell club but if you do we are the gang you want to get to know.

Hi Mommyathome,

I had truncal lymphadema. No one at the cancer center recognized it ( kind of scary as I had cords all down my trunk). My PCP hooked me up with a great LE therapist. It took 3 months of treatment plus lots of compression garments. Assets or underarmor- wore them for work.

It started with tingling and pain on my side and back. Keep going until someone helps you. Most PT's don't know anything about this (and neither did my radiologist and Oncologist!)

Well if I end up on my LE side I sometimes wake up with that pinching feeling I described before in my upper trunk. This morn I had it but as soon as I got moving it went away.  I try not to sleep on LE side but man I flip like a fish at night and unless I put a  pillow behind my back and lay on my side I end up all over the place. It even happens with the pillow but keeps me in position for a few hours.

hi everyone. I'm looking for help here. I have sore muscles right under both tissue expanders and to the bottom of my ribs. At first I thought I pulled muscles. But now I feel a hard cord on my prophylactic side (not the cancer side where nodes were removed). The cord goes from my ribs down about 6 inches over my stomach. Is this truncal lymphadema? Also the center of my back feels like its out and I can't get it to "pop" back in. I am trying to get into the lymphadema pt specialist soon. I was educated and received therapy for my arm that had nodes removed but nothing for the trunk and nothing for the prophylactic side. I had no idea you could get cords in the stomach

Hi binney. Many thanks for your reply. I've been very physically active lately and don't know if the cord has been there or just started. I didn't know you could get them in your torso but guess it comes from the reconstruction. I'll report back once i see the p.t. thanks again.