Lymphedema guidance

Runor, our lymphedema that results from cancer treatment is called "Secondary Lymphedema," because it's secondary to surgical and radiation trauma. Lymphedema that results from an in-born defect of the lymph system is called "Primary Lymphedema". People can be born with primary lymphedema present (usually affected lower limbs), or it can develop around the time of puberty. Many of us with LE secondary to breast cancer treatment have had a hard time getting our doctors to acknowledge the condition and/or to refer us to proper treatment, but some with primary lymphedema wait literally years for their condition to be diagnosed, meanwhile being accused of overeating or oversensitivity to "a little swelling."

We breast cancer-related lymphers are not even the only cancer patients who develop LE. Node sampling for melanoma, gynecologic and prostate cancers, and head and neck cancer can also result in LE. These are far less likely to be acknowledged than BC-related LE, and in some cases can be much harder to treat effectively.

It's also possible to develop secondary LE from any trauma. For instance, football players who sustain repeated trauma to their chests, or people with smack into the steering wheel in an auto accident. After the earthquake in Haiti there was a glut of new LE problems because of crush injuries from collapsing buildings. For all these people, finding diagnosis and treatment can be a frustrating life-long journey.

There is a third cause of LE, found in tropical countries where a mosquito-borne parasite infests the lymphatics, blocking lymph flow. This condition is usually referred to as elephantitis, and it can result in truly grotesque disfigurement.

For those (even doctors) who trivialize LE as "just a little swelling," the facts are that LE is an inflammatory condition that creates changes in the underlying tissues, resulting eventually in an accumulation of fibrotic tissue below the skin that cannot be reduced, which is one reason why prompt treatment is critical. Left untreated, LE can cause skin texture changes and leakage of caustic lymph fluid through the pores, resulting in skin deterioration and weeping wounds. And every kind of LE also compromises the immune response in the affected areas, making infections more of a problem.

All that just to say, the actual nature of LE is too little understood even in the medical community, leaving us to be our own best advocates, and making forums like this one absolutely essential to getting the best care to the biggest share of lymphers. I'm thankful for all the sharing that goes on here and grateful to bc.org for making it available.

Onward, all!
Binney

Runor so glad I was surfing the other night on bco and bumped into you.

This is a great place to learn how to control lymphedema. Also some girls here wrote a fantastic website called stepup-speaking.org where you can also learn everything about this condition. That website will help you find a therapist in your area that has decent qualifications. They will help you gain control and have a better life. Yeah moving forward.

If your proactive it will be so much easier taming the le beast. Education is key here and that means POWER!

Yes some doc will poo poo the thought that you have le. Mine laughed in my face and said I wouldn't. I had no swelling or even pain for that matter. Just tingles. Feeling full and heavy when doing big chores. Got rid of that dang doc eventually. I'm wishing him to be wrapped in le bandages and stuck up on the Seattle space needle just because....he needs to suffer a bit like us.

No more chopping wood and other heavy chores till you get this figured out. Please don't volunteer to move someone and all there boxes right now. Anything your not use to csn cause more swell.

Yes we do have pretty normal lives here but managing le can be time consuming but worth it in the end.

We have some that fly fish. Horse ride, bike, ski hike etc. It can be done we just have to dress our cuts and bug bites with antibiotic and watch for infection. Just watch to not tire your arm and take frequent breaks. Just put in five hours gardening but I did build up to that. I usually start out with about a hour till I'm use to the work and repetition of it.

And once your ready do join our le kick butt thread for exercise because that's so helpful for le. No competition just encourage each other and checking in o report our exercise. It's a fun thread!

So go ahead and post questions and we'll try our best to help.

Meanwhile pop on a super tight Cami to help your breast/ trunk swelling. Drink lots of water. Rest arm above heart. Stick arm straight up in air and pump fist 25 time thru out day to help drain fluid.

Take care.

runor love love love dahlias. And their le friendly. No thorns and easy to manage. I leave mine in ground unless I split them. Me lazy gardener! lost 15 to extreme cold winter Then this year was cold spring out west. I'm trying to cut back on purchasing because I'm getting to be an old dog and their is too much gardening at my place. I have about 30. Here is my newest. Named Bodacious. Awesome color on both sides of petal. It's a big one.

Yes your done wood chopping. I think you had some other heavy chores listed on the other thread. Be nice to le arm and it will treat you right.

In aug I blistered, gouged and crushed my finger connecting two pipes together just because I didn't want to bother DH to do it. Well I suffered big time. Even though I dressed it and watched it like a hawk I ended up being allergic to polysporin and it swelled huge. I'm still wearing a bandaid when I'm out and about cause it's healed but tender. We gotta take care of ourselves but still need to live. It's a balancing act. Agh bedtime

runor. You sound like me. I hate giving up independence but eventually I realized that I could make my le worse if I didn't give up a few heavy duty things otherwise DH would really have more work in the end if my arm became totally useless. I try to stick to lighter duties but yah it's a internal fight.

Yes dahlia hobby is so catchy.

Good for you for looking after your arm!

Planted another tree today. Contorta dwarf larch in a huge pot. It's a beauty! I had to go up and down 13 stairs 6 times lugging dirt up. I rember days when I had a good arm and could do it in two flights. See with le we can still do things but it might take longer cause we got to work smarter to beat the le beast.

Then I took it easy.

runor... I am learning so much!!!! I had a great appt with my therapist! So I keep getting told that my feeling of fullness, tightness, aching, throbbing down the arm, arm fatigue... is not lymphadema because my measures are not significant enough... well, I am starting to believe them!

I believe I have mild lymphadema and the symptoms are actually caused by nerve entrapment. For the first time since February, my pain level is coming down!!

The area where my lymph node incision is in the armpit is called the nuerovascular sleeve. It carries arteries, nerves and tissues that affect arm & hand. Once my therapist did Active Release Technique ( google it ) I. Began to feel numbness go away! My pain level went down! I have had two sessions with him and he worked on the subscapularis and the neural vascular sleeve.

I wonder if others are dealing with entrapped nerves but think it is LE? I believe I still hv mild LE... but nerves were my biggest pain!

Jacki

Jackie, interesting! I hope you ARE getting to the bottom of this and resolving some of the issues. Any improvement is reason for the happy dance! I will keep this in mind because I too only have slight swelling in the arm, although I can tell by how my wedding ring fits and how much my compression sleeve aggravates me! There is some swelling, and I want to keep it that way, it could be much worse!

I haven't done pump but I see you have good results. I do know we should not rely solely on the pump though. We are todo all the other care also. MLD. Garments, Exercise .wrapping if you need it etc

Looks like your finding what works for you.

Kicks is very active in the farm yard with horses, fly fishing etc and she swears her le is better when active in the summer. I'm wondering though if you may have overdone it because you said you got puffy at night and this should not be.

Mornings we should be our less swollen and smallest measurements because we don't have gravity pulling fluid down. I still say yikes right now to chopping wood,

take frequent breaks with other chores and elevate your arm.drink water. Stick arm straight up in the air like your going to give a answer and pump fist 25 times thru out work period. Or any time for that matter. If I did heavy chores like that I would probably wrap at night because my arm would feel tired and achy telling me that I need to wrap if I want to feel better in morn.

Your right we do have to experiment to see what works best for each person though. Steep learning curve.

If I sit to long and don't move my arm and shoulder I get ache behind shoulder. Or if I rest the affected side to long on back of chair it starts to ache. So I'll lean forward off of it. If I'm stuck sitting in a meeting i go to bathroom and move my upper body around for a minute and deep breath and tai chi breather exercises. That usually cures the ache for a while as it stimulate the lymph system.

Insurance may pay for liposuction for lymphedema

https://cancercompass.com/cancer-news/article/5987...

I post this here for feed back and perhaps to share some info with other people.

I consider myself new to lymphedema and while I have not been officially diagnosed, I am pretty sure that the swelling, throbbing ache and weird tight feeling skin are LE. It affects my arm, hand, armpit, shoulder blade, side next to my boob, ribs under my boob and the boob itself. I had minor annoyances with it after surgery, but radiation made it way worse! Every morning when I wake up the swelling in my side and underarm make it feel like I'm carrying a folded towel tucked under there. It feels bulky and thick, awkward and miserable.

Yesterday I started to make a quilt and felt stiff after many hours in the sewing room. Before bed I decided to lay on the floor and let my back stretch out. I have done all the stretches and exercises suggested with my arms and have a full range of arm motion. It can be a little stiff at times, a bit of niggling stiffness in the armpit / shoulder joint, but overall I'm pretty pleased with my range of motion. I'm NOT pleased with being swelled up and puffy all the time. And hurting.

So I lump myself onto the floor like a beached whale, legs out flat, arms out at side like a T, and oooh, gee, that is painful. Weird. I can move my arm out like that standing up with no problem but laying down with my arm to the side produced some unhappy pulling sensations. Hmm. Then I bring my knees up, to flop them over to the side to stretch out my lower back (arms still out in T formation) I flop my knees away from my bad boob and HOLY MOTHER OF SWEET HEYZOOS I almost peed my pants! Good god did that hurt! From my shoulder to ribs and the breast itself, right to the nipple, there was a ripping, tearing pain like white hot lightning and tears came to my eyes. NEVER has that happened before in my life! But it occurred to me that I have not done this stretch since I finished radiation. I laid on the floor stunned, afraid to move. It felt like a bear had sunk its claws into me and ripped my chest apart. So, being the clever lady I am, I did it again and yup, hurt just as much the second time. And the third. And the fourth. You get my drift.

I went to bed shaken at how much this effing cancer has shattered my life. I try not to think about it because it makes me furious, demoralized and so sad. All night, when I move in bed, I feel stiff. I suspect this is tamoxifen caused because since starting tamoxifen I have noticed that my overall level of pain has gone up and is constant, most noticeable when I move in bed at night. When I opened my eyes this morning my first thought was, gee, I wonder how my chest and boob are going to feel today. I got up anticipating pain.

What actually happened was that for the first time in well, a long time, I WAS NOT swelled up in my ribs and armpit. My bad boob side felt like my other boob side! What?! I flapped my arm like a bird a few times to make sure I wasn't imagining it. Swelling gone, or at least greatly reduced. Wow. It felt weird to NOT be swelled! It's like that torso twist (which was so excruciating) broke loose something that was tight and bound. I had no idea how cramped up and tight everything was because in my day to day moving my body is not subject to that twisting motion. But it seems to have had some positive benefit and now I know that I really need to focus on that and keep things from scarring, binding and plugging up. I cannot say if this will keep things permanently better, but this morning I see a positive development in swelling reduction! All I had to do was hurt like hell. I suggest everyone immediately make a quilt then lay on the floor. Take some wine with you!

My stiffness this morning was the normal morning stiffness that I think is tamoxifen caused. Over my chest, where I apparently shredded it last night, I do not feel anything out of the ordinary. Just less swelling than usual.

Good experience. It could be that you loosened scar tissue allowing for lymph flow to get thru. Still do watch yourself. Once we have le unless early stage it's usually not correctable.

mexicoheather... I too have ulnar nerve issues! I thought it was LE PAIN... I have both. I wear my sleeve and it helps me not “ feel” the swelling as much. The pain & throbbing from the ulnar nerve was terrible. Luckily I found someone who has released the entrapment. He is a certified A.R.T therapist. It is so much better!!! I literally was ready to go on nerve drugs. So thankful!

Yes sitting and prolonged inactivity makes my Le worse too. Activity and cardio help it feel better.

Jackie

My PT therapist gave me arm exercises with three pound weights and exercise bands, it helps too

Here they are