Breast and truncal lymphedema

nope123

I’ve move from PT for nerve impingement to lymphedema OT for breast and truncal lymphedema. My OT says she considers me Stage 0 lymphedema in my arm due to symptoms I have however I don’t have enough swelling yet in my arm. Yet.
I’m in compression bras 23/7, have multiple pads to wear in bras for additional compression, do MLD daily and OT weekly. I’m also in a compression sleeve during work and repetitive activities. It’s a lot.
So my question is…..will all this make a difference? Has anyone been stage 0 and reversed it? Because honestly so far I see no improvement. I’m feeling like lymphedema is just going to be a post treatment complication now. So frustrating.

piperkay

I wore compression garments daily and nightly for several years after the onset of my LE just after finishing chemo. (Not sure if I was Stage 0, but no more than Stage 1, I believe.) I saw a PT a few times and tried MLD on occasion. I was fanatical about the sleeve and glove because I wanted it to keep from getting worse. But it was, as you say, a lot, and I really let the MLD go. But then, at the recommendation of my breast surgeon around 4 years out, I weaned myself off daily use and stepped down to wearing the sleeve and glove only when I flew, during repetitive motion like exercise, or when the weather was hot and humid. Otherwise, I go "au naturel" and things are good - no progession that I can tell although sometimes I get some temporary extra swelling that does go down after a few hours. And I feel SO much better! Still keeping an eye on it because I know it will never be "cured," but it's quite manageable. Good luck!

nope123

thank you. @piperkay, I’m sorry you’ve “been there, done that” also, but so glad to know it’s become manageable for you. I’m trying not to be frustrated but holy cow it feels never ending. And really I guess it kind of is. On the up side it has made me pay attention to the subtle cues my body gives and just be diligent of taking good care of myself. With summer coming, I am nervous about how my body will respond to the heat but we’ll see.
Thank you again, I truly appreciate your insight. ❤️

maggie15

Hi @nope123, I have breast lymphedema which has improved some after five years. I still do MLD and the OT exercises I was shown but could not tolerate compression garments because of radiation nerve damage. After rads my affected breast was larger than the other but now they are close in size. The lumpectomy breast was smaller than the other right after surgery but I never had the proposed nip and tuck on the other side because of LE. I take all possible precautions not to injure my right arm but don't use a compression glove.

I'm in a lymphedema clinical trial so my arm is measured by two methods every six months. Each time I have been told it is a tiny bit worse but I haven't reached stage 1 yet and hope I never will. All the best for avoiding arm progression.

nope123

Hi @maggie15 thanks for the info. Glad you’re in a trial with regular follow up, and glad for improvements for you. I’m sorry you have nerve damage. PT did help me regain my range of motion thankfully. The compression is not fun, for sure. After wearing a new sleeve yesterday, 20-30 pressure, my arm felt better after a 10 hour shift at work. Not sure what that means but have OT today so will discuss. I too keep up with whatever exercises they advise to do.
Thanks again for your insight. Truly appreciate you. ❤️

ratherbesailing

nope123, I also ended up with mild truncal lymphedema. I'm with piperkay. At first, I was vigilant about daily massage, and this might have helped keep it in check - but now only when I've overdone it. More than five years out, I continue to wear a compression bra every day, and do have some swelling when I don't. I am also careful to keep doing weight bearing exercise, as research shows this helps keep it from progressing (and my lymphedema arm is definitely weaker and requires work it to keep up strength.) As for the sleeve, like you, I wear it on flights and any time I know I will be doing anything repetitive or strenuous.

My advice is to keep up with the massage and wearing the bra and sleeve if that is what your therapist recommends. And perhaps, like piperkay, your can wean yourself off compression with time. But for now, I'd say try and pay attention to what your body is telling you. Do you notice a feeling of fullness after certain activities? Eventually maybe try some less strenuous activities without the sleeve and see how your body reacts. But, by all means, follow your therapist's advice and don't overdo it.

Above all, know that eventually this will become a routine part of your life. Certainly not one you wished for, but one I hope you will find easier with time!

nope123

Thank you @ratherbesailing for the insight. I’m grateful to hear from women who understand and are willing to share their wisdom. Truly, thank you.
My OT moved me up to a 20-30 compression sleeve as I was still have aching and heaviness in the 15-20. I hate to say it, but my arm feels better in the 20-30. If I’m not wearing the sleeve and I do strenuous or repetitive activity, my arm aches, and is heavy at times. Sigh.
With summer and heat and humidity coming, my goal is to keep up with everything I’m doing in the hopes my arm doesn’t swell.
All this compression stuff is annoying in the heat! lol!

Thank you again. ❤️

runor

Hello.
Diagnosed in 2017, surgical biopsy. Lumpectomy and node removal. Second surgery within hours of the lumpectomy to repair hemorrhage and all the internal stitches that tore apart while my boob ballooned to the size of a beach ball.
Despite having been injected with dye so my nodes would show up like green peas, surgeon said she could only find one, single node. She went digging further into the tissues than she normally has to, looking for more nodes. She says she dug deeper until digging any deeper became a very bad idea, so one single node got sent off to pathology.
I did not have immediate problems with lymphedema. No one had bothered having any discussions with me about the possibility and when I brought it up I was mostly brushed off, 'it happens very rarely". Bullshit.

Radiation 3 months later triggered all the bad stuff. Within hours of my first radiation treatment my arm blew up like the Jet Puff Marshmallow man! After radiation treatments I had to wear a compression sleeve.

Now, almost 10 years later I have an issue, and I admit the whole thing sounds batshit bonkers. But hear me out. Some of you might have noticed similar. Or… I am bonkers.

I have gained weight. All in my middle. My pants dig into a gut I didn't used to have. I look like a tube of toothpaste that someone put an elastic band around. Not only do I look fat, but I feel fat. And my fat is terribly, terribly uncomfortable.
Is it normal for fat to be uncomfortable?

The waist band of my pants carves a Grand Canyon groove into my stomach. It HURTS.
The band on my bra carves a groove in my side.
The shoulder strap on my bra gouges into my flesh.

I feel bloated. Bulbous. Massive. Squishy. Repulsive. You know the drill.
Some of this is definitely menopause weight gain and body shape shifting. But this much? I do not eat a lot. I eat the same as I always did. But I just balloon and feel like something is squishing me. Constricting me.
I have wondered, seriously, if I don't have a gut tumour? But since I have no symptoms of any sort, other than looking hideous in my blue jeans and avoiding being in photos, I doubt it's a tumour.

But since the fat, the flub, the roll, the back bacon, the ooze seems ever slightly worse on the bad boob side of my body, I wonder if this growing flubber isn't partly lymphedema that is settling in the lowest tissues. When I had the bleed after lumpectomy I was black and blue to my pubic bone. I literally looked like I have been hit by a truck. It was shocking and horrible as the blood oozed into all my abdominal tissue, my entire left rib cage and around the back to my shoulder blade. These are the areas now that seem ever so slightly more puffed and fat and gouged into by end of day?!

So sometimes, not often, I lay in bed at night and stroke my stomach and sides, sweeping my hands toward my groin, where lymph nodes are clustered, and towards the middle of my chest (upper abdomen area) where more lymph nodes are found (I think). This is always followed by the same outcome. About 4 or 5 hours later I pee out about 3 gallons and the next day my pants are a hair - just a hair - less diggy inny.

Is it possible that I am gaining lymph fluid? Because nothing, no food reduction, no exercise, is budging the pudge. I HATE how I look. But I really hate how I feel, Because this feel very uncomfortable. I am aware that I cannot lymph massage my way to a 50 pound weight loss, which is what I need. But does anyone else have knowledge that it is possible to look fat, feel fat, but be floating away in lymph fluid? Or am I bonkers and this massage - pee - slightly less killer tight pants a possibility?

nope123

Hello @runor I’m so sorry you’re having problems! I wonder if you have truncal lymphedema now? Mine affects my ribs under my armpit and my back on my cancer side.

The gift that keeps giving, this cancer bullshit. I hope you can find some answers. I am scheduled for lymphatic imaging (ICG injection) in October to see what lymphatic pathways I do or don’t have in my arm, breast and ribs. For the hospital system I use, I had to go to a plastic surgeon.

Good luck to you!

binney4

Hello, runor. What you're describing may certainly be lymphedema spread. Like you, I had only one identified lymph node after surgery—in my case, a mastectomy. Over the next few years I experienced lymphedema spread to my torso, abdomen, and one leg. My lymphedema therapist helped me understand that some people may have lymph systems that are less robust than others—mine included, unfortunately!—that can result in further spread. Your situation may be different, of course, especially since you experienced considerable trauma to your entire torso as a result of your hemorrhage, which could predispose you to further lymphedema spread. A qualified and experienced lymphedema therapist will be able to tell you if this is lymphedema or not. And, if so, teach you how to clear the lymph fluid from your abdomen and trunk with manual lymph drainage focused specifically on those parts of your body. There are also compression garments for both day and night that keep swelling controlled and continue to reduce the swelling over time. In other words, this is a long game, but there is help if we have the courage and persistence to advocate for ourselves. Doctors can be slow to recognize lymphedema, or unaware of how to refer for treatment, so it may be up to you to help locate the local resources you need. Every time we can educate our medical professionals about our lymphedema needs it's a win not only personally but for all those who come after us. Hang in there! It's treatable, and there's hope!

Gentle hugs,
Binney

runor

Thank you nope123 and binney4 for your replies.

Binney4 … leg? How curious that you should say that! It made me pause and go..huh. For quite a while now, close to two years, my leg on the 'bad' side of my body has felt…clunk. Heavy. Less responsive. I have never connected that with potential lymphedema. I can't say for sure that's what's going on. But it sure is an interesting thought.

I live in rural Canada. Treatment here is … good luck. You could hobble into the local emergency room with your severed leg sticking out your backpack and they will ask you to take a seat for the next 8 -10 hours before someone sees you. Meaning that getting lymph help is pretty much not going to happen. Shockingly, it almost seems like doctors don't even want to acknowledge that it's a real thing. You would not believe the casual non-interest I have faced when bringing this up with a medico.

Once, very near after my surgeries and radiation I had an ultrasound and the tech casually said, you have an awful lot of fluid in your tissues, as she was running the doo-hickey over my ribs under my boob. That was the closest I have come to anyone uttering a truth or recognizing there was a situation. But she was just a tech and if she made note of it on my report, no one else picked it up or felt it was significant. It makes me angry.

I practice my own massage and I'm going to have to start doing so a lot more regularly. To think I can swipe and rub my way to a bikini body! Well, maybe not. But if I could get my waistband to stop gouging trenches in my gut, I'd be happy.

I battled arm swelling in the beginning, wore the sleeve and all. One day laying on the floor to stretch my back, some move I did sent screaming daggers of agony across my chest, I screamed out loud, scared poor Hub. It was like some stuck gate opened. The arm lymphedema began to resolve after that. Now I do those agony stretches regularly and the arm swelling is controlled. (mostly, there are some bad days). Now I need to find the agony stretch for this flubby gut..

Thank you all .