Presenting the NEW Breastcancer.org Lymphedema section!

Moderators

We are pleased to announce the long-awaited, brand new, up-to-date Lymphedema section from Breastcancer.org, featuring information on:

• Lymphedema Signs and Symptoms
• Reducing Risk of Lymphedema and Lymphedema Flare-Ups
• Lymphedema and Exercise
• Lymphedema Treatments

and MUCH MUCH MORE!

Enjoy and we'd love to hear your feedback!

--The Mods

kira66715

Nancy, this is the first we heard of it, and the axillary web link posted earlier was news to me. Good news, so we all need to check them out.

Kira

lago

Awesome! I know I had to do my own research on this. My MDs didn't give me much info initially and assumed I was low risk since only 10 nodes, I'm thin and no Rads.

This will be great for newbies and those that are so frightened of getting it. 

cookiegal

Much of this is excellent.

The link to Anita is broken.

I have to nit-pick to criticise.

Glad Cheveille was involved.

Would like to see links and information for truncal garments.

The work section never really mentions wearing garments to work.

Good job! 

Moderators

Thank you for your comments! We will be passing along your feedback - including valuable nit-picks! - to the editorial team.

The Mods

lago

If you could add photos for identifying for newbies. We have all seen the advanced stages by googling but as we know it's best to catch this early. This can be more subtle.

Binney4

Mods, this really looks good! Huge subject, yes? The more you learn about it the bigger it gets, but your coverage is broad and the writing style is both easy to comprehend and even comforting. I'll second the shout-out for Andrea Cheville's input--yes!

But if it's okay to nitpik...well...

There are a couple of mentions in the first sections about truncal LE being "above the rib cage," but I think you mean above the bottom of the rib cage (which you do say in the "when and where" section). That would be confusing to a woman experiencing swelling on her back or side along the ribcage, but not "above" it. (Above it is the neck or supraclavicular area).

The use of an electric razor is sometimes recommended over a regular razor, but they can cause razor burns, nicks or rashes that can lead to cellulitis. Maybe better to recommend caution in shaving and care of any skin irritation or scratch. Just a thought.

In the infection section you say "If you develop infection or recurrent infection you can continue wearing your compression sleeve..." That's not a recommendation I've seen anywhere--quite the opposite. Please check that out with a few of your experts, as it could present real problems.

Under the laser treatment section it's extremely important to note that the laser has NOT been "approved" by the FDA for treatment of lymphedema, as you state. It has only been"cleared." Those are two distinct categories: approval requires exacting research to prove both efficacy and safety, but clearance does not require anywhere near that rigorous study. (The "clearance" issue is a dangerous loophole in our healthcare protection and is currently under study by Congress to close off that option.) 

Under compression pumps, the cost can easily range as high as $8,000 for more advanced and safe models. (Check, for instance, with Tactile Systems, whose Flexitouch pump is considerably more than $3,000.)

Under the bandaging section, the examples of short-stretch bandage brands is quite strange. Jobst, Solaris, and CircAid, for instance, make garments but not bandages.

Under the garment section, I agree we need some discussion of truncal compression garments, such as WearEase and Bellisse, but also other options for truncal compression.

Also in that section, you mention that sleeves go "from wrist to middle of the upper arm." Actually if it stopped at the middle of the upper arm you'd be in big trouble with upper-arm swelling. They go higher than that.

And also in that section, the classes you mention are U.S. classes. Many garments available in the U.S. are made in Europe, where the compression classes are different. Women whose therapists order European garments need to understand that if they're in a Class II it will NOT be the compression you have shown there.

Finally, in the section about making a treatment plan, under item #6, when you say that we can all decide how much effort we want to put into managing our LE it comes across as a matter of individual aesthetics -- do I care if one arm is slightly larger than the other, or don't I? In fact it's also a matter of considerable increase in infection risk and progression. While I don't personally like scare tactics, it's only fair to point out somewhere on that page that as we're choosing the compromises we're willing to make with LE treatment we do need to be aware of what we're risking medically.

Thanks for undertaking this Magnum Opus--much needed and appreciated.

Binney

LtotheK

You all are amazing.

OnePetie

As newly diagnosed with LE, the information was truly helpful! This is indeed a huge task you're undertaking.... Many thanks for doing so.



One tiny note.... Under signs and symptoms... If an indentation is left after pressing on the skin, isn't that pitting edema as opposed to non-pitting?



Again, kudos and thanks!

1Athena1

I just learned more about LE from Binney's excellent post. Glad I don't have it - gladder that we have a section on it. Pictures would be a great idea as lago suggests -  not only for LE but also in other sections of BC generally.

1Athena1

Another suggestion mods:

That you crosspost this announceent on the Moderator Announcements forum? Some people don't search by active topics or theme but by "who," if you know what I mean.  

Moderators

1Athena1, the announcement was also posted in the Research News, Blog Entries and Moderator Announcements forum.

1Athena1

Slapping paw to head - sorry. Didn't notice. :-)

kira66715

Some nit picks:

Risk factors: chemotherapy--taxane chemotherapy increases the risk and having chemotherapy in the ipsilateral arm increases the risk as well--if you need references, I can supply them.

The airplane travel risk: I've looked at the three articles in the literature, and they're all flawed. There is no evidence to "prove" that wearing compression garments during flight is harmful--that comes from the one study, an Australian breast surgeon "studied" about 300 of his personal patients and asked them 1) if they flew and 2) if they developed LE and 3) if they used compression garment: and a few women who flew--literally around 5--who flew with compression garments developed LE. He didn't measure them. It was not controlled, and likely the women who flew with compression garments had some suggestion of LE--there was no proof of cause and effect. 

Inherent genetic risk: There is a study by Finegold that proves that some women with secondary LE have a gene found in primary LE. The International Best Practices Guideline lists inherent genetic risk, and AW Stanton did a study of women with LE and showed that the lymphatic system in their good arm was not functioning well. Some of us are at inherent risk--Stanley Rockson says the line between primary and secondary LE is blurred.

Reducing lymphedema risk after surgery: clinical experience and three studies show that limiting stretch through the axilla for the first 7-10 days encourages lymphatic healing--which is limited. So, gentle stretching should wait.

Also, good studies show that axillary seroma should be treated.

Lymphedema and infections: this is a case where due to the rapidity of the infection and severity, many patients have a prescription on hand, with instructions to start and report to their physician. While overuse of antibiotics is a concern, so is delayed treatment.

Testing: BIS requires serial measurements--and as you noted, it is most sensitive prior to swelling, the company and experts who use it, find it of no value with obvious swelling or fibrosis. Also there is technique involved: prone position, empty bladder, no caffeine and SERIAL measurements.

And the bottom line is: no one agrees on what is significant: ? a 3% increase in arm volume=latency, a 5% increase in limb volume is felt to be highly sensitive, the 2 cm circumference discrepancy led to 91% incidence in Jane Armer's studies

Love the Andrea Cheville grading criteria

Totally agree with Binney on the goals: mild swelling can lead to irreversible tissue changes. It's not okay to condone that.

Also agree with Binney on daytime compression sleeve manufacturers--where are Juzo and others. Solaris is just starting to beta test their daytime garments

Again, the laser was never approved, but cleared for marketing. The STAR rehab course recommends that phonophoresis be avoided, and no one has ever looked at whether laser used in the axilla can cause recurrence. I am aware of Memorial Sloan Kettering uses a more powerful laser in specific conditions--fibrosis. The low level laser was marketed directly to patients--very dangerous for an unproven device. Andrea Cheville denounced the low level laser at the NLN conference in Orlando, she looked at all the studies and said there was no proof of efficacy, and use of an unproven technology is expensive and potentially dangerous.

All nit picking aside: thank you for getting Andrea Cheville--she is amazing, and Nicole Stout and Katie Schmitz do have their inherent bias due to their research--one did the research on early intervention--too bad she didn't have a control arm, and the other publishes on resistance training in LE, but knowing their research "bias" they still created a very useful resource.

That's my quick read nit pick.

Kira

cookiegal

Kira:Totally agree with Binney on the goals: mild swelling can lead to irreversible tissue changes. It's not okay to condone that.

There was something about the language suggesting for many people LE is mild and temporary that concerned me.

I really only know one person for whom it just went away. Maybe there are more and they just are not here?

On the positive note: it was really good the writer mentioned about how long post radiation swelling was acceptable and when it is a problem. 

My first LE gave me a off the shelf sleeve and warned me to use it if I had the classic symtoms

So I don't want to bore anyone with my endless story but my LE presented very oddly, and I never had many of the symptoms that signaled LE. (No heavyness or pitting, very minimal discomfort) 

At some point you many want to add something like, "There are some cases of LE that have atypical presentation and may be difficult to diagnose. Doctors and even LE therapists may say that you don't have LE because your symtoms are not "classic". You may need to see a physician who specialises in LE for a second opinion."

I give one of my later LE's (and Kira) credit for encouraging me to see Dr. Francis.

kira66715

Cookie, there is a strong movement for early intervention to decrease LE and other arm morbidiity.

I think early intervention is far better than late or no intervention, but  a close look at the movement shows some concern:

1) the first 2008 Nicole Stout study on putting Jobst sleeve/gauntlets on women with 3% volume increase had no control arm. Did she "cure" their LE, or was it post op swelling that was going to resolve?

2) the impedimed folks are pushing their device for early diagnosis, intervention and part of their literature holds out the possibility of "reversal" or "cure"--it's even in Rockson's so called registry page--his registry is really a data collection of women without LE to see if bioimpedance will change the course of their disease.

Add the Avon White paper--a plea for insurance coverage of bioimpedance and the NLN's new position paper, and we can see the intersection between good researchers and the influence of funding from manufacturers and a good premise that is based on some flawed science.

So, I totally agree with you that this promise of cure if we catch it early is simplistic and not true for many of us: I was aware of my swelling the first day it occurred. 

Yet I've seen women who swelling and it got better. Did it go away completely? Hard to know.

The cure/transient thing cropped up with impedimed. 

I looked for the latest stuff on pubmed and there's a whole issue of Cancer devoted to early intervention and rehab, and it shows improved outcomes and I do think that transient stuff is buried in one of the abstracts as well.

Overall, a good approach, but some of the details are off.

Kira

Galsal

great to see all of this, thank!

KittyDog

Yeah...but sorry I do not like the new format of the boards.  It's so small with all the stuff on the left.  At least on my lap top. I will just have to blow it up everytime I come in so I can read it.  Glad to see some changes today though.

Cincerely

Hey y'all..... Has anyone with lymphedema and radation nerve damage have increased pain in the upper arm/arm pit area when walking.... Especially in the heat of the day? I love the warmth and heat of summer, as it makes me feel better than ever being cold. And I love the warmth of a well heated pool. It's the only thing that makes my right arm auctally feel warm inside. But.... I find that when I am in the outdoors heat, my arm and shoulder and hand screams in pain, and feels heavier, but does not visibly appear swollen. It gives me way, way, more than the usual daily pain. I can endure quite a bit of pain, however this truly brings tears to my eyes when it happens. Since it is something I can point to, the heat causing these symptoms, I was wondering if it's something related to lymphedema. My arm does not swell, nor do my fingers/hand. Odd. The summer aso brings on a nasty itchy rash on my upper under arm. Additionally, my right breast scar gets a hateful heat rash from the radiation I had in 2006 and does feel a bit swollen after its been itchy. My dermatologist has given me an ointment to use that sometimes helps.

Anonymous

Hi, Cindy - Welcome to the lymphedema forum. I encourage you to start your own thread in the main section asking these questions. The women here are wonderful and supportive. I know many can relate to what you are experiencing and will offer suggestions. The achy and painful sensations without swelling can be the earliest stages of LE, and I urge you to have yourself checked by a qualified lymphedema therapist. A great resource with current and accurate info is the StepUp-SpeakOut website. It has a section on how to find a well trained therapist in your area. Here is the site:




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




By the way, I have LE in my trunk (on side of chest below armpit) and in my arm and hand. The heat makes me miserable! I am just popping in while traveling, but I know others will be along to answer your questions, so please don't hesitate to post below!

cookiegal

Oh I had one more question. I thought that every so often when a woman has flap recon the LE goes away? The new section seems to point to reconstruction as a risk though.

alice66

I have the flexitouch pump in my home and I have been using it every night. I can't believe how much the swelling in my arm has went down and I have been using it every night. My insurance paid for the pump or I would not have been able to afford it. I wear the LymphaDiva sleeves during the day. These are my favorite as they have pretty patterns to choose from.

Binney4

Alice, hello! And welcome to BreastCancer.org,

Really glad you've joined us. It sounds like you're managing to keep everything in good control. I have a Flexitouch too, though I only use it for times when my lymphedema is being real difficult. Otherwise I manage with self-MLD, day sleeves, night garments (kept in the refrigerator duriing the day this time of year!) and lots of exercise. Important to remember to clear the nodes in your neck and groin before using the Flexi (and after too, for best effect). LymphaDivas really has a wide range of great colors and patterns. Their "tattoo" design is especially fun, and it sure looks real on!

Be well!
Binney

rebcasey9

Thank you for this new section.  I am a newbie poster, as well as just now dealing with lymphodema after right mastectomy and lymph node removal.  Wanting to stay positive.  One more Chemo treatment to go, then radiation.  My tumor was 5.3 cm, so I think I have to go through with the 30 treatments of radiation after the last Chemo.  I am scared.

FireKracker

Thank You each and every one of you.

Where would we be without you?

Blessings and hugs K

Binney4

Rebcasey, welcome!

So sorry you've joined our Sisterhood of Swell, but glad you found us. Hooray for being only one chemo treatment away from putting that part behind you! The radiation was the scary for me too, but the days ticked by and I finally reached the end of the treatment journey. You can do it! Tell us how we can help.

Have you found a good lymphedema therapist? They can really make a difference, so I hope you have one you like and trust. Please do keep us posted.

Gentle hugs,
Binney

Katarina

Is Cellulitis directly related to Lymphedema?

Hugs

Kat 

lago

 Katrina you are more prone to it if your lymph system has been comprimised. That is why it is so important to avoid cuts, scratches, bug bites, etc to your arm… and if that does happen to clean and apply a topical antibiotic to the wound. I actually carry hand sanitizer, bacitracin and band aids in my purse and I don't even have kids.

jsmiley60

This may not be the right place to ask this, but it appears to be active and I stumbled upon it, so here goes:

BMX 6/10, exchange surgery 2/11/11 and implants removed 2/28/12 due to infection and left side not healed correctly due to radiation; After I had implants removed I had a drain in on the left side FOR NINE WEEKS AND A DAY! It was horrid, but saw an infectious disease dr and since drainage was clear and light yellow, he didn't feel any need for concern. Now, 2 months after drain removed, PS says there is fluid on left side of chest in 2 spots, so I am having an ultrasound with aspiration done next week. In searching on the internet, I found that there was something called trunk(or chest) lymphedema and I'm kind of freaking out!

Anybody got any idea what could be going on?? What does fluid from lymph system look like? The PS caught me so off guard I didn't even ask any questions.....I am not in pain, except for occasionally having a sharp pain somewhere in left side of chest or under arm, which have had those off and on since 1st surgery.

Thanks for any input you have!

Binney4

Kat, it's not always LE-related. People without LE can get cellulitis--it's a skin infection, so certainly not unheard of in folks with no cancer or LE history.

The relationship between cellulitis and LE is complicated. Excess lymph fluid in the tissues increases the risk of infection because lymph fluid is warm and protein-rich--perfect conditions for bacteria growth and reproduction. So if there's excess lymph fluid in an area (even if it hasn't yet resulted in obvious swelling or a diagnosis of LE), cellulitis risk is higher than normal, and any skin break is hazardous.

But on the other hand, once our lymph system has been compromised by cancer treatment (surgery, rads), an infection can be the event that overwhelmes the whole system and triggers LE. So for instance, if a woman has cellulitis in her breast after a lumpectomy, it may be an indication that she already had Stage 0 LE in her breast, or the cellulitis may overload her lymph system and trigger new LE--or she may get over the infection and not have LE at all.

None of this is simple!
Be well,
Binney

jsmiley60

Anybody want to take a stab at answering my questions? Have a suggestion where I should be asking these questions?

Thanks!