Lymphedema guidance

runor

Marijen, hooray!


I can do almost any motion in a standing position without too much trouble or pain. A little stiff and creaky. But when I laid on the floor and did the torso twist thing - holy lightning Batman! I am still having swelling in my arm, but noticeably less in the pit / side / ribs. I am going to continue to lay on the floor and do those stretches and hope for continued improvement. Too bad it doesn't seem to have helped my arm.


I am pretty sure this goose egg is not a mammary gland. I do have a cyst in that area, but I've never been able to feel it before. Now I can SEE whatever this thing is. It feels like it's just under the skin. I can feel humps and ridges on it. So gross. I have a feeling someone will want to cut it out of me regardless of what it is. I have visions of...I cannot even give voice to it. It's too scary.

marijen

.Maybe the cyst is infected

runor

Exercise update.

Laying on the floor, arms out like a T and flopping bent knees over is still painful. Not as painful as it was at first. But still. I feel it. I hold the twist for a bit. The swelling in my armpit, side and ribs is still very much improved since I stumbled upon this exercise.

Now I realize that as I inch my arms upward (still flat on my back on the floor) to more of a Y shape, things get worse. I can hold my arms straight overhead when standing, no problem (like heading into a deep dive off a diving board). But try that laying down! BIG PROBLEM! So now I lay down with my arms up over my head and just feel the stretch. And BOY do I feel it! Why this should be possible standing and almost impossible laying I do not understand. BUt doing these same moves standing left me with swelling. Doing it laying down made a big difference.

It is my hope that as I continue to stretch these seized up tissues, that the breast and arm swelling will resolve somewhat. Wouldn't that be great?

If any of you try this, do so slowly and gently. I can only speak for myself but something in there, bound up and tight, is coming under tremendous force when I stretch like that. It hurts like hell and I think a person could do damage if they weren't careful. Also ... when arms are out at side in a T shape, even having your palms up or down can affect how severe the stretch is. Experiment.

2FUN

I'm sending you hugs to runor. I'm thinking I probably have some truncal edema. Yes it's sucky. My PS said just make an appointment and I'll write your referral. I am a PT and im.used to being able to fix other people, now I can't fix me! I'm having lots of other medical problems too. Let's hang in there together, we can work on our problems/bodies and still have a good life!

karenmarie

hi all!

I have had Lymphadema for 4 years. I wear my compression sleeve on and off. I also have a comfy quilted sleeve I wear at night. Here's my question: my kids were home for Xmas with their families, which meant more cooking and cleaning than usual for me. About halfway thru the week, I noticed the upper part of my arm is more swollen than usual and it feels very congested. Almost a grainy feeling. I've been working on the home remedies for moving the fluid to no avail. The pain is minimal, but it does feel very heavy and achy. Any suggestions?

hugz4u

Karen. Sounds like you overworked your arm and have a flare preparing for holidays. So unfair huh when your just trying to have fun!

See a qualified lymphedema specialist to get control of your flare. Google. stepup-speakout.org to find a therapist in your area if you don’t have one.

I think wrapping will be helpful and is in order. That's what I do for a few days/ weeks when I flare to get my arm back in control.

For the past two years I have gradually lifted light weights 3 times a week so my arm is in better condition to work. Still I have to be careful of repetitious activity's or I get in trouble like gardening at the start of season or stirring dough etc. But I have no problem with groceries, milk jugs etc. due to weightlifting.

Let us know how it goes. If you know how to wrap start ASAP.

TaRenee

where can I find information on the remedies and wrapping? My lymphedema is minimal but it’s there. I got dismissed from PT because the cording issues were mostly resolved so I don’t have anyone to ask around here.

karenmarie

thank u for responding hugs4u! I’ve been a member of the community for quite a while, but I rarely post. I do not know how to wrap, but I have a call into a LANA Certified therapist that practices in my town. I’m hoping I can get into see her soon!! Thanks again!! Kare

natsera

Well, I had my lumpectomy last year, and I thought I was done with this and on to better things. In early December, I fell backward and caught myself with my right arm, which is the cancer side, of course. I pulled the muscle badly, but nothing torn or broken. Well, starting a few weeks ago, I noticed that my arm had started to swell between the elbow and the wrist, and when I measured at the midpoint of my forearm, my left arm was 7 inches and my right arm was 8 3/4.. At the wrist, left arm is 5 5/8 inches and the right arm is 6 1/2. Right below the elbow, my left arm is 10 inches and my right arm is 11.

So it seems likely that I'm developing lymphedema. I pointed out the swelling to the oncologist, and she wasn't concerned, but I am, because my right forearm is noticeably bigger than the left. And if it truly is, then I want to treat it early and not wait until damage has been done.

So I'm looking for tips and advice on how to advocate for myself, and what to expect. Any response would be appreciated.

Outfield

natsera,

Check out this website, created by some longtime BCO members who immersed themselves in the medical literature as well as having the experience of lymphedema:

https://www.stepup-speakout.org/

It really is a good place to find reliable information.

The medical professions as a whole have not been well-educated about lymphedema. Part of that is because until very recently there was hardly any research about it. Be wary of anybody who tells you things like having lifetime lifting limits or that lympedema is painless or that it's not really a worry or that measuring arm circumference is a good way to diagnose it. Those are all signals that the person to whom you are talking isn't up on the most recent science. Any lymphedema is a concern, even if it's not huge and disfiguring, but you're right - you will have to advocate for yourself because a lot of doctors don't know this.

The good part is that you're right - learning to take care of it early is a huge step in the right direction. You will need to advocate for yourself to first find a doctor willing to make a referral to a lymphedema therapist, and then find a good lymphedema therapist. A good lymphedema therapist can teach you bandaging (a good thing to know even if your lymphedema is mild), show you self-massage, and help direct you to a good fitter so you can get compression that fits you. The big problem is that a certificate saying someone is a lymphedema therapist could mean they took a weekend course, or they took hundreds of hours. There is no governing body, like there are state boards for nurses, doctors, physical therapists, etc, setting standards and keeping track of people. You will have to do some research. Stepup-Speakout is a great starting place.

Your oncologist's reaction does not surprise me. It's disappointing, but not a surprise. Lymphedema isn't really taught in medical training. My personal belief is that there's more to its frequent minimization in oncology: a lot of doctors involved in taking care of cancer patients don't want to admit how much damage they cause. They're trying to save lives, and seeing people dealing with side effects of treatment or even disability for years afterward is disheartening. So some of them just don't let themselves see it. Some of them also may be too arrogant to admit they don't know much about it, but I hope they are fewer in number. If your oncologist won't give you a referral, search around until you find someone who will.

Now here's my personal story: my lymphedema started shortly after I finished radiation 7 years ago. It was painful at first, not terribly, but I thought I had pulled muscles in my forearm. I was super skinny at the time so it was very easy to see, even though that arm did not measure any larger than the other one. Well, it's my left hand, I'm right handed, and I had played a ton of sports that used one arm and hand more than the other for more than 35 years before I was diagnosed, so they shouldn't have been the same. I had a more sophisticated test (bioimpedance) , which isn't perfect either, but showed a huge difference. But really, I didn't need a test. The shapeless puffiness vs. cut muscle with overlying veins on the other side was really easy to see. I started treating it right away, did get it down some, and now manage it with a compression sleeve and a night garment. I have a glove that I rarely, rarely wear (it's been several years now). I've had cellulitis several times, and have been seriously ill with it twice. Cellulitis is infection in the skin, and lympedema makes it more likely. When I've got something as bad as for example the flu, my arm swells. Between the cellulitis bouts and just viral illnesses, I've had a good handful of times that I haven't been able to fit into my compression sleeves so was really glad I knew how to bandage. Bandaging is very effective at bringing swelling down, and adapts to any size you are. The good part is, I do everything I ever did with only one exception - I don't dunk my arm in hot tubs.

natsera

Hi, Outfield, and thank you for the response. I really needed it because today the PCP confirmed that I have mild, early stage lymphedema. She wasn't worried about it, and told me I could wrap it, but no real education about anything. I told her I have a sleeve because I was referred to a lymphedema specialist right after surgery, and she recommended getting a sleeve, but I don't know things like how much time to wear it, and what to do at night in bed.

Because mine is early stage, I do notice that it is better in the morning and gets worse as the day goes on. So maybe I don't need anything at night for now, but I'd still like a comprehensive overview so I knew what to expect and what can be prevented and what's inevitable.

I enjoyed looking at the speak up and speak out page -- there was some good information there!

I'll post more as I find out more. Thanks again.

hugz4u

For the fact it's better in morn and gets worse at night I would wear garments daily to avoid progressing. Early stage lymphedema is reversible but not when progressed. Catch it now as it's easier to deal with early. Go back to your lymphedema specialist for education, measurements and learn how to wrap in case you get a flare up then you can manage it yourself. Yes the stepup website is the best! Self education is key to a good future with LE.

Your PCP isn’t worried about it because it’s not her arm!

natsera

Hi, hugs4u -- hugs back!

I don't have a lymph. specialist -- my doctor didn't think there were any in my city, and she didn't think it was necessary anyway. So I called the cancer center where I went for radiation, and the nurse navigator there WAS concerned. They have hired a new person, but she's still in training and won't be seeing patients until the end of March, and the NN thought that was too far off. So she sent a message to the doc asking for a referral, but hasn't gotten back to me on whether the doc answered.

So I'm left to stew -- I do have a sleeve, but the NN advised me not to do anything for the moment, because too aggressive management can make things worse. But leaving it untreated can make thing worse too.

The other question I have is that you and others have mentioned flares. Meaning it's sometimes better and sometimes worse? What makes it worse? I know that heat makes both my hands swell -- but it's not summer and only my right hand got swollen (doing better today). What other things could affect it?

Thanks!

Outfield

How disappointing but not surprising, another doctor who isn't worried. Yes, mild lymphedema is not so bad to live with. The problem is, if you have no idea how to manage mild lymphedema, you can do nothing to lower the chance it will progress. Do see the therapist when she's available! I'm wondering what the NN meant by "aggressive management." Managing lymphedema correctly doesn't make it worse. Some specifics to pursue when you are able:

- Learn to wrap. Wrapping looks like just putting an ACE bandage around your arm, but it's really very different and the bandages themselves are not ACE bandages. They're "short-stretch" and, as they sound, aren't nearly as stretchy. You could definitely cause harm by trying to wrap with no instruction at all. That said, there are some good videos on YouTube.

- Consider a night garment. It's thought that this type of compression actually works similarly to wrapping and can improve swelling, not just keep fluid from accumulating. Sleeves generally don't improve swelling much, they're better at preventing it.

- Learn lymphatic drainage massage. It's really unlike regular massage. It works super for some people.

In the meantime, you can use elevation (I slept with my arm up on pillows, which is not easy, while waiting to be seen), wear your sleeve, and do exercises like holding your hand up in the air and opening/closing your fist. Don't wear your sleeve at night: people don't move around as much at night and it's possible for sleeves to form creases and wrinkles (night garments cannot - you'll understand why when you see one), which can actually trap fluid rather than help it leave the arm. I wear mine all day, except swimming.

Part of learning to take care of lymphedema is learning what triggers yours. You can read lists - heat, illness, overwork - but everyone is a little different. Watch for patterns. I think I might have mentioned that my most consistent trigger is being sick (not counting with cellulitlis).

Molly50

Hi there, thank you for the posts in this forum. You are all amazing. I did some reading on the step up site as well. I am new to the idea of lymphedema. Here's what I noticed over the past few months. On my prophylactic side I had a rash suddenly appear. It appeared to respond to antibiotic ointment and my PS was out of town. I was afraid my implant was developing an infection. After it healed it came back a couple weeks later. Again seems to respond to neosporin. Once the it healed I noticed my implant was no longer loose (I had problems on that side being loose and drifting to the right so I had to wear bras with side support. Now it's solid like my radiated side. A few weeks after that I noticed constantly being sensitive and sore in my right axilla. My left always hurts. BS thinks that I have trapped nerves from either alnd or the TE. Then I noticed that I was getting a rash from my fitbit on my left wrist so I had to stop wearing it. Next my left upper arm was sensitive to touch and slightly bigger than my right. I have a new MO so I showed him my left arm and chest and he said that he thinks lymphedema. He referred me to an OT but the one I was referred to doesn't do LE. I am waiting for a updated referral to a local hospital that has LE therapists.

My question, is there anything I should do or avoid in the interim? My entire upper back is swollen and sore. My bras are leaving marks. I don't think I should be wearing them.

2FUN

depending on your state, you can go to PT without a referral. I would advise on finding a LE PT, set up an appointment, and then you can get the doctors referral to keep insurance happy

Trishyla

Hey Molly,

I live in the Pasadena area and have an amazing LE therapist. She's associated with Huntington Hospital. PM me if you'd like her contact information.

Trish.

Molly50

Trish, I sent you a PM, thanks! Unfortunately with a HMO I can't go to a specialist without a referral. Hopefully the new request will go through quickly.

Trishyla

Molly,

Haven't checked the PM yet, but wanted to wish you good luck in finding a competent LE therapist. I have moderate truncal lymphedema and the massage makes a huge difference.

Trish

natsera

I saw the LE therapist today. He said it was stage 2 because it no longer goes down completely overnight.😢 I wish the oncologist had been more proactive when I told her it was starting to happen.

So the plan is to go twice a week for 5 weeks to get the massage for drainage and to learn to wrap. It seems that the wrapping more or less immobilizes the arm, so I wonder how you do your activities of daily living. I can't imagine all the actios that need the use of the dominant a

Anonymous

I've been diagnosed with mild lymphedema. My LE therapist said it was early, 3%. I've been doing the massage, the self-massage, the bandage wrapping. I get fitted for my sleeve tomorrow. It's on my right side, unfortunately since I am right handed. I have minimal swelling but pain and discomfort. So much so that it wakes me up at night. I also have loss of range of motion in my shoulder. Is that unusual for mild early lymphedema? My LE therapist measured my range of motion at the first visit and said we'll look at that more at my next visit, after I asked about it this time.

runor

Oceanbum, I don't know if the loss of shoulder motion is caused by the lymphedema, but having body parts contracted from surgery and radiation does affect motion and also can flare lymphedema. I thought I had good range of motion until I laid on the floor one night and did some stretches and realized that I was totally seized up. Those exercises, painful as they were, were of GREAT help with the trunk and armpit swelling I had. I thought I had good motion. I was wrong.

My LE wasn't too bad and then I got this bump in my armpit. I watched it grow and get redder. I thought it was an ingrown hair from shaving. Which is stupid because since radiation I have hardly any hair in that armpit, most of it has not come back at all. Anyway I squeezed this large, growing bump and OH MY GOD my LE went insane! My arm is aching and tight and the back of my hand feels like someone injected water into it. So awful! So .... shave your pits with great care!

I hope you get your LE under control and try laying on the floor and stretching that arm out to the side and above your head, flat on the floor. It's a different set of movements and might help you out.

Outfield

Wrapping doesn't immobilize the arm, but - even if you do not wrap the fingers - it makes it much harder to use. Bulky, and you don't get full length of the fingers. Can't use that hand for anything sticky or messy, although I did get some gloves that were larger than what I usually wear for things like that.

Oceanbum, is the pain in the areas you have swelling? I had that - it was my first symptom. It got better with time and treatment. On the other hand, if you have pain in your shoulder or other places, the same things that put us at risk for lymphedema put us at risk for other shoulder problems. There's also cording, which can hurt a lot. Has your LE therapist talked with you about the pain aspect?

Anonymous

Thank you runor & Outfield for your replies. I'm sorry I was so long in getting back to you. My husband had a heart attack Thursday. He's Ok, thank God! The doctor said it was severe but they got to it quickly and were able to put in a stent. So he was in ICU for 2 days and a Step-down room for another day and came home Sat. He's doing well. If I can just get him to lighten his workload a little. But this is the man answering e-mails and phone calls from his ICU hospital bed - until I took his work phone away from him!I

I'm going to talk to my LE therapist about the pain and loss of range of motion tomorrow at my appointment. The swelling is minimal. I think he said 3%. So I'm not sure if I'm really dealing with a Lymphedema problem or if it's something else like a frozen shoulder. I hope it's not that because I had one of those on the other side about 5 years ago. I ended up with surgery for it. It wasn't a bad surgery or recovery. I just don't want to go thru another surgery right now so soon after my other surgeries.

runor

Oceanbum, oh my god, about husband. I HOPE he is okay. Not what any of you needed to deal with right now.

Also hope you get some answers about your shoulder and swelling. I never realized how lucky I was until life changed and I wake up every morning with pain. Typical - you don't know what you've got 'til it's gone! Keep us posted. Healing hugs to you AND Hub !

Anonymous

runor, he's doing well. Thank you for asking! He's just really bored! Lol

Anonymous

I talked to my LE therapist yesterday about my loss of range of motion. He took some measurements and we discussed cording. He gave me some home exercises for it. He also did some gentle arm and shoulder stretches. I was amazed that I didn't have any pain during that. I really hope these exercises will give me some relief. This is more pain than I had with either of my surgeries or with my frozen shoulder.

Anonymous

I got woke up this morning from a dead sleep. I was sleeping on my left side with my right hand between my legs. I got a sharp pain in my right bicep that woke me out of a dead sleep!! I was like "Holy cow, what the heck is that?!" I haven't slept like that in quite a while because it hurts my shoulder too much. I must have done it in my sleep without realizing it. I guess I'll go back to not sleeping like that!!

natsera

Been to the LE therapist 3 times now.The wrapingIS helping but it’s uncomfortable and disabling, to say the least. But I will graduate to a sleeve — I just don’t know when.

I have a question: How does one know if it's radiation induced? I was never warned that radiation could cause lymphedema, and told that since I only had 2 nodes removed, I was at very low risk, and radiation would reduce my risk of recurrence from 10% to 1%. So I agreed to it. However, low risk is not no risk and now, months after the end of radiation, I have developed visible and palpable lymphedema. I also wonder whether a bad fallbackward in December, which resulted in a badly pull pectoral muscle could have triggered it.

All in all, it’s discouraging

hugz4u

Nat, good your improving. Yes it will be nice to graduate to sleeve but while your in wraps make sure your taught how to do it because you will get a flare and want to treat it yourself. If sleeve scratches your inner elbow get some antifriction stick that runners use. I can’t live without it. My inner elbows are sensitive as baby skin.

You won’t know if it was a fall or radiation induced because you can have it sub clinical for a long time. Both can cause le. Radiation frys everything. Think of hamburger in a pan at a high temp.it gets cooked to death. Our tiny fragile lymph nodes are not that hardy as we would like then to be. Some rad docs are uneducated in lymphedema or just don’t want to admit they give Le. As one surgeon said. I don’t treat lymphedema, I give it. At least they were truthful