Topic: Risks for Lymphedema?

That's what I wondered.  I knew the more you had removed, the greater the risk, but wondered if anyone here had only 3-4 removed and had this problem.  Are there other risks involved that it happens with some than others? 

Hi wishiwere,

As the saying goes, it's better to be safe than sorry . Like Binney said, we're all at risk. We have to take good care of the arm where the surgery was. Watch out for swelling and tightness of the arm when you get a cut or infection. I met a survivor at the PT office, she had 2 nodes removed, and she's having all the symptoms. I had 8 nodes removed, and I have mild swelling and tightness. Go figure  It's really hard to tell.

Take care!

Aurora

Hi, manos,

I'm so sorry. After bc treatment anything else is completely unfair! Especially sunburn when you were supposedly protected. I sure couldn't say what the trouble is, but in answer to your question we do remain at risk for lymphedema for the rest of our lives. And unfortunately a sunburn could provoke it, because any injury to our affected arms and chest causes lymph fluid to rush to the site, and too much can overwhelm the compromised lymph system.

Still, I'm going to hope you get a diagnosis soon and it's not lymphedema, but something quick and easy to "fix."

In the meantime, you might try elevating your arm as much as possible (and on a pillow at night.) Drink plenty of water, and watch carefully for any sign of infection (new redness, swelling, warmth to the touch, fever, itching).

I'll be thinking of you. Do please keep us posted,

Binney 

Ah, phooey, manos! Never seems to end, is right. But I truly admire your spirit!

You'll want to talk with you onc about the possibility of lymphedema and ask for a referral to a well-trained lymphedema (LE) therapist. (That'd be somebody with at least 135 hours of specifically LE training beyond their PT or OT certification and at least a year's experience treating LE - call before you go and make sure.)

An LE therapist will be able to evaluate your situation by medical history, physical exam, and arm measurements. In cooperation with your oncologist, she can provide a diagnosis, and if it's not LE she can teach you risk reduction methods, show you prophylactic lymph massage, and fit you for a sleeve and glove to wear when working, exercising or traveling.

If it is LE she'll explain the therapy program, which should include daily Manual Lymph Drainage massage (MLD), wrapping with layered bandages, exercise and skin care. That may last two weeks or longer, after which you'll be fitted for sleeve and glove and possibly a bra as well to add compression and support, and you'll have learned the self-care to maintain everything in good control.

Hope that's not more information than you wanted. And on the other hand, if you want more please feel free to ask.

I too was told my risk of LE was low. A single node removed on one side, prophylactic mx on the other. With LE , anything's possible.

I'm still holding out for better results for you, manos. Hope to hear soon that all's well with you.

Binney 

So?  Binny?  Is the sleeve something you need to wear with only a few nodes removed, if you do NOT have LE as a precaution, or only after you have LE?  I'm so confused.  I work in the yard  for sometimes 8-10 hours day between mine and others.  I've gotten scrapes and bites already this year and am concerned now :(  The scrapes are b/c of just finished a 3 week stint of having to use 5% cortizone on my palms to get rid of a rash after chemo :( So they are at risk for injury be/c of the thinned skin.  I try to wear gloves all teh time, but sometimes I just forget!  It's hard after 35 years in the garden to change your ways overnight :(

Wow, you two! Sounds beautiful! It's "hibernation" season here. Trying to finish eating the veggies from the winter garden before they bolt from the heat. Freezing some, passing the rest on to neighbors. Everything hunkering down for the desert summer. Our resident mocking bird never seems to stop, even serenades us through the night. Inca doves and Anna's humming birds are our most enduring avian residents, with an occasional hawk lurking overhead, out of place in our urban streets. We've had a wet (for us) winter and the saguaros are fat with moisture stored for the months ahead, but you can see everything else just sort of drawing in and preparing to take cover for the tough times coming. Sort of like Fall in other places, I guess!

Goodness, yes, wishiwere, do protect yourself with a WELL-FITTED compression sleeve and glove when exercising, doing strenuous work, and traveling. And yes, it sure is confusing! Doesn't help that we get so many versions from our docs and nurses. Also, yes to gardening gloves - I too have trouble getting used to that. The habits of a lifetime don't tumble easily, especially not for something as unwelcome as LE. As for nicks, scratches, insect bites, sunburn -- do keep the antibiotic ointment right at hand and use it immediately. I have several tubes and keep them in various strategic places so I can react fast. Wet wipes in my purse, too, in case I can't wash up on the spot. Seems to do the trick for me!

Hope some of that helps. May your gardens flourish!

Binney 

Hi!

We're not just finishing summer -- we're just starting it, but it's the AZ desert and it's wicked! We grow our gardens through the winter and spring, then let everything lie fallow during the 100+ months ahead. Along about October we'll plant again. Weird, huh?

It'd be great to see a LE therapist for an evaluation. She'll do baseline arm measurements so you have a future reference, show you how to do prophylactic massage (very nice!), and fit you for sleeve and glove. She'll check the fit later, too, so you'll be sure everything's in good shape. Here's a website for finding a well-trained LE therapist: www.mylymphedema.com. Click on the Therapist Locator and follow the links.

You'll need both a prescription for the sleeve and glove and a referral to the therapist, and you can get those from any member of your medical team. Most of us do best with our oncologists, but you never know. Whoever's willing!  Obviously this is not standard practice or there wouldn't be so many of us completely in the dark about our risk and what to do about it, so it may take some insistence on your part. Insurance doesn't always cooperate, either. In a pinch you can get the prescription and take it to a well-trained and experienced LE fitter (generally at a prosthetics and orthotics supplier, but some of the gals here get them at full-service pharmacies), but you won't know who that is without some phone calls and direct questions about training and experience. They should NOT be selling you just whatever they happen to have on their shelves, y'know?

By the way, fully-trained LE therapists ARE the health professionals who deal with LE in this country, though there's been some movement in recent years toward an actual medical specialty in diseases of the lymph system, called Lymphology. That'd be nice!

Be well!

Binney 

Binney, I have a son in Tucson toss him a Desert Bunny for me.

Oh, Debbie, those are all hard things! The thyroid nodules must be so scary with your family medical history. Have they done any biopsies yet? I had to have thyroid biopsies, and it wasn't nearly as bad as it sounded, so take heart on that! At least it seems like they're watching you carefully, so you can be hopeful that they'll catch any new problems very early.

Good for you for putting on your boxing gloves and charging into the ring! We'll all be here cheering you on. Have you talked to Robert Weiss about getting reimbusement for the garments you need? He's very good at advising us about where to turn and how to get payment for our LE services and supplies. Goodness! A loose body suit is no good to you at all! Another place to look for help might be the National Lymphedema Network (www.lymphnet.org). They have a new program just starting for helping with garment costs. I don't know what their guidelines are for that, but you could email them and find out if you'd qualify.

Have you sent in an appeal and a grievance to your insurance company? Sometimes they have to be "educated" about our needs, because otherwise they tend to refuse us everything.

Keep us posted on what you're trying and how it's working.

Big, gentle ((((((HUGS!!))))),

Binney 

Dear Binney and ladies,

How can you tell if you have Lymphedema or not?  I have two Lymph nodes removed.  But one week later I first feel something on the inside of my upper arm.  It comes and goes.  Later the feeling travels down to my thumb.  My arm is slightly swelled to my wrist, but not obvious.  I also have cords in arm pit and down.  I went to a LE specialist.  She said the chance is 50-50.  But my surgeon said with only two Lymph nodes removal, I won't get Lymphedema.  He said I am having Phlebitis because the vain is stucked to the skin and it takes time for the cord to get soften and for vains to find new route.  I had two weeks of physical therapy, it seems to have improvement.  However, I just had a fill in expander and later takes them out.  Both experience seems to made my arm improvement backwards.  The strange tingling sensation comes back.  Anyway, does anyone know whether I am having Lymphedema or not?  Can it be just a mild one and stay that way?  Or it always get worse?  I compare my two arm to wrist, the swelling one is about 1/4 to 3/8 in more than the other one.  For example, the wrist is 5 7/8 vs. 6 1/4.  Does that count as Lymphadema?  Thank you for your input.

Betty

Hi Binney,

Thank you very much for your reply.  My swelling arm is not my dominant arm, that is why I think it could be LE.  I did see a therapist that has the special training.  That is helpful.  It is her that told me I have 50% chance is LE.  I completed 2 weeks of training and have two weeks left.  Do I have to complete therapy till all swelling and cording disappear in order to prevent it reoccur?  Because I only have 2 weeks left, I wonder if I can achieve that. Is the Le swelling and tightness always come and go, or it just stay there and keep getting worse?  My surgeon insist I am not LE and he said people with LE will have to wear the sleeve the rest of their life every day.  Is that true?

I look at the web site of National Lymphedema network, under symptom stage one, when I press on my arm, there is no indentation holds afterwards.  Does that means I might still have a chance not having LE?

Thanks for you reply.

Betty

Dear Binney,

I am so grateful for your advice.  I still have cording, but it is so much better than the beginning.  In the beginning, it restricts me for reaching out.  Now I can reach anywhere and it is not painful, but I can feel the cord from the center of my armpit reach out to about 1/3 of my inner upper arm.  Before I went to LE specialist, I had cords in inner wrist and elbow bend.  But after 2 treatment, they hardly show up.  But there is a small patch of skin on my upper wrist is tight when I try to bend the wrist.  Also after filling and removing the saline water from the expander, my inner upper arm is somewhat numb.  I am not sure it feels heavy or not.

On my first visit, the LE specialist said she think I have half the chance for LE.  She said if the treatment makes the swelling improve, then the swelling may be caused by surgery.  If the swelling continue to increase, then it is Lymphedema.  I said I don't want to take the risk, just treat it as if I am having Lymphedema.  She was going to give me 3 times a week for 8 times (less than 3 weeks), then 4 day continuous treatment for 90 minutes for Lymphedema.  She suggest I can consider wearing a sleeve during those treatment time.  But then my surgeon denied that request for sleeve, and crossed out the Lymphedema treatment.  So we are doing the Lymph message for the drainage with a little bit trying to break the stickness between the cord and the skin.  I ask her what happened after the 4 weeks session end.  She said I can have a revisit one month later to reevaluate the progress.  Basically she think I am on the border line of LE, and she hasn't make up her mind if I have it or not.

Do you have to go through stage one to stage two?  The feeling of hardening in stage two is vert obvious or can it be not very obvious?

When LE is properly taken care of, do you still have the hardening feeling in the arm, or you can feel normal until it flares up next time?

I will see my oncologist sometime later.  I guess if I am not well then, I will try to see if he can get me continue the LE therapy.

Thank you for your support and giving me input.  I have a friend just had mastectomy.  I try to pass all the information to her, so she won't get it.

Betty

Hi Binney,

I saw my oncologist today.  He told me to raise my arm on the wall and push my body towards the wall to stretch the cord and try to soften it that way.  He said a swelling is a swelling, whether it is from surgery or from lymphedema.  But he still think with only 2 nodes remove, the chance are very low.  Since I am doing physical therapy now, he thinks I am covered for now.  He told me to be low in salt intake to reduce the swelling.  But at least he gave me the prescription for sleeve, in case I need to use it in the airplane.  I guess no one is giving me a definite diagnose for now.  I can only do my best to try to control the situation.

I am very, very appreciate for your input.  I will keep you posted on my progress.  If there are more questions occur, I will seek your advice again.  Thank you so much!

Betty

Good morning!

BettyO, I'll be thinking of you and hoping all the swelling clears. (Be sure the prescription is for a glove as well as a sleeve, so you don't develop problems with hand swelling.) Have a fun trip!

Debbie, that sounds a bit grueling! I hope it will be a breezy day so you can stay cooler! Some hot-weather tips that may help are to carry lots of water with you and drink often so you stay well-hydrated. I usually carry a spray bottle as well for spritzing my face and shirt. Because it's dry here in the desert I also spritz my garments to keep my arms cool, but if you live where it's humid and they won't dry out quickly that may not be a good idea. Remember your LE garments won't protect you from sunburn, so use a sun-block or wear something to cover your skin. Wear a broad-brimmed sun hat or carry an umbrella (parasol). You might want one of those special bead-filled neck bands that you soak in water and it stays damp and cool - turn it occasionally to move the heat away from your skin. The American Cancer Society's TLC catalog had them, but I've also seen them at Walgreens. And do stop walking as soon as you sense you're overheating or tiring, so you don't end up regretting an otherwise wonderful occasion. Most of all, enjoy the day!

Be well!

Binney