lymphedema after snb

If you HAD had a realistic assessment of your LE risk in advance, would it have changed any aspect of your treatment choices? 

 

Add me to the list of those with SND and LE. I had 2 or 3 (depending on BS vs pathologist report) nodes removed. I also wasn't told anything about not lifting arm higher than shoulder for X days. The day after surgery I stretched my elbow up to my head to show my BS how good my ROM was and she said to take it easy but nothing more.

I also had a seroma, which was drained twice and then got the in-dwelling drain placed again. Possibly wearing compression would have helped, but I didn't know and wasn't told. 

A few months later I got mild trunkal LE, coincidental with doing vigorous PT-directed exercises -- pushups, etc. -- without a sleeve, when treated for shoulder impingement on my non-surgical side. Unfortunately my PT (LANA-certified too!) at the onco clinic didn't recognize the trunkal nor saw anything wrong in those exercises as I fully informed her what the other PT had me do. It may have been coincidental with my having to sleep on the MX side since I'd just had a port placed which made it painful to sleep on the non-MX side.

BTW they wanted to place the port on my MX side ("but it's easier for us to place it on the R side") and I had to really argue with them not to, based on my gut instinct at the time. 

And a few months after that I developed arm/wrist swelling -- a few days after flying. It resolved after a day, and I've only had it once since then, and also resolved quickly. But I continue with the trunkal which is a pain.

Trinity -- hope all is well.

 And the info here has been so wonderful, especially Kira & Binney, and all the rest. This is where I send people for info on LE!

Trinity, hope you are feeling better.



Binney, thanks for the reminder about post-op orders. Will be writing all over my arms!



Lunakin, ack! Your story is all too common it seems. I'm sorry that you had to join us but like you, I'm so grateful for the amazing support here.

There's lots of controversy about risk reduction, as there aren't good medical trials to prove the need, but LE research is underfunded and they're based on clinical experience.

The issue with compression on planes is debatable when you're at risk, not when you have LE.

Binney and I recently spoke to an LE researcher who thinks compression makes the lymph system "lazy"--I'd like to see her publish that opinion, as she's been spouting it for years, with no data to support it. I do know that another LE researcher, who is more of a clinician, hates poorly fitting compression, and recommends the lowest compression for arm sleeves on planes for women at risk--15-20 (only Jobst makes it.)--along with a class one gauntlet or glove.

Personally, I don't do compression a lot during the day, but do wrap at night, and whined to my LE therapist about how long I have to do this, and she said, until you don't swell at night. Still blows my mind that three nodes out, but a series of mistakes--lots of overhead stretching, over a dozen axillary webs, an axillary seroma, bug bites and then rads could cause a permanent condition. But I totally think I never had a robust lymphatic system to start with.

At the NLN conference, they showed a photo of a woman with a huge arm who had one node out, and no rads. There is a lot of research on genetics and inflammation in LE. And some very hopeful studies using anti-inflammatory medicine to treat LE--anxiously awaiting that study.

The measures to avoid LE post op are just becoming more clarified.

After all the weight lifting articles :don't get me started on how the author--Katie Schmitz--only studies resistance training and allows mis-statements of fact on her official website--"weight lifting lowered the risk of LE in women with >5 nodes removed by 70%"--the study was not powered to determine that and all the studies on both women with LE and women at risk showed was that if weight lifting--the PAL protocol--was done carefully, slowly and twice a week, women were not harmed. Weight lifting did not cure or prevent LE--but she puts it out there.

So, unfortunately, oncologists were coming home from hearing these studies and told one woman on the boards--Lago-who developed LE--to weight lift to cure it.

What the weight lifting studies show, in a positive manner, is that if we strengthen ourselves in a mindful, slow, and progressive manner we can possibly improve our lymphedema, and possibly lower the treshold to trigger it.

What she didn't do was look at exercise in the highest periods of risk--after surgery, during chemo, during rads. The first study, women had to be about 5 years out from surgery--those with LE.

So, I get upset when I see her putting statements that are not supported by facts on her official PAL website, and not disseminating her PAL protocol to the YMCA's to use with Livestrong.

As Lunakin has said: many of us were harmed by exercise at vulnerable times. I was stretching overhead within a day of SNB--sure set me up for LE.

My LE therapist tells me that Robert Lerner MD, the founder of the first LE clinic in NYC hated "reach for recovery".

Personally, I just can't tolerate arm weights, therabands--but I'm fine with working my core. And I'd sure like to see her look at how the deep breathing and strengthening from other exercise impacts LE. I hated resistance training before LE. The only thing I really miss is tennis. My LE therapist told me she got a recent email about Yoga for Breast Cancer, and an oncologist wrote in that some of the postures concerned them about LE risk. Downward dog is problamatic. And Cobra.

I had a patient at our practice develop LE after doing pushups. Yet the "Strength and Courage" DVD that Katie Schmitz supports from U of Pittsburgh, has women doing wall push ups and says to only worry about LE with weight lifting if you've had an ALND and tell your doctor if you swell and it persists for over a week--with weight lifting.

So, sorry to rant away--the truth is out there, it's just not quite clear what it is yet, but we're learning more all the time and there are areas of controversy.

Off the soap box.

Kira

Binney's amazing LE therapist won't take LANA test, but is Vodder trained and re-certified. And, Binney has met with a local PT who took a weekend course, but then learned more and is clinically great. So she won't show up on the lists. The lists are there to steer us in the right direction, and to deal with the fact that the APTA's official stance is that any PT can treat LE--yet they get insufficient training in their basic schooling.

Kira, I have my txs at UPENN.  They are very pro on strength training, that's where Katie Schmitz is.  They have a program for people at risk or people with lymphedema that I am going to participate in once I am under control.  Do you think that would be a mistake?

Kira,

Recently I stumbled on a series of what seem to be credible research articles on the topic of compression: http://www.lymphormation.org/downloads/position-documents/Compression-Hosiery-Upper-Body.pdf .  I say 'seem to be,' because I don't see any review notes and I'm not qualified to critically evaluate the presentations. But some of the articles state that compression for anything but lower-limb LE has not been proven to have demonstrable benefit. 

I read these out of interest because I'm trying to understand exactly what's happening in the body when there's LE and what's going on when massage and compression are used to treat it. But I also read them with a good dose of skepticism, because everywhere else I look, compression seems to be the standard of care--and the anecdotal evidence from pages and pages of personal stories in these LE topics supports it, too. 

What's really odd about the article series is that even though some authors state more than once that compression isn't a proven therapy, they go to great lengths to then discuss the best ways to achieve compression in garments. Just curious--in your view, is there actually controversy about the value of compression in LE treatment?

Thanks...

Carol

Kira, you need a double Hobie with flippers underneath, that you pedal!  That's my backup plan if my upper body strength training isn't up to par by spring. I prefer paddling my single, but we have a pedal-hobie double and if necessary, I can bump the dog from the front seat. Or put DH in the front, take the back seat, and he'll never know if I'm slacking...!  We also live where we can drop right in from the house, on a lake that is formed by a dam, so we can portage the dam and continue four hours downriver to Lake Michigan.  It's very motivating for getting back to presurgical condition.

I'm bringing in the PALS for Life workshop to my little 3-traffic-light town, meaning rather that I'm bringing the lead PAL trial trainer to train a group of personal trainers and LE therapists here. That's how I'm getting access to PAL training. The workshop is scheduled and I have some sponsors to help with expenses and am just about ready to approach the 60 or so gyms in a two-hour radius to recruit more trainers; have several already that are very interested. 

I'm really antsy to get started after my trainer is well versed in PAL, but still must wait a good bit for PS green light on anything that would put weight on my core.  Sigh. But that still leaves lots I can do with my very creative trainer and I suppose that conditioning some body parts is better than conditioning no body parts.

I'm delighted to learn your a kayaker!

Carol

Lunakin, I forgot the details--women were 1 to 15 years out with stable LE--but the average number of months since diagnosis was 79 +/-45 in the weight lifting group, 88+/-45 in the control (so pretty far out):

Eligible women had a history of unilateral nonmetastatic breast cancer 1 to 15 years before study entry and a body-mass index (BMI, the weight in kilograms divided by the square of the height in meters) of 50 or less, were not actively trying to lose weight, and had no current evidence of cancer, no medical conditions that would limit exercise, no history of weight lifting during the previous year, at least one lymph node removed, and a clinical diagnosis of stable breast-cancer-related lymphedema. Lymphedema was defined as a difference in the volume or circumference between the affected and unaffected limb of 10% or more or, according to Common Toxicity Criteria,17 arm swelling, obscuration of the anatomical architecture of the arm, or pitting edema. If a woman reported having lymphedema but it was not evident at study entry, she was required to provide written documentation of a previous clinical diagnosis of lymphedema and treatment from a certified lymphedema therapist.18 Stable lymphedema was defined as the absence in the past 3 months of therapist-delivered treatment, more than one arm infection requiring antibiotics, change in ability to perform activities of daily living, and verified changes in arm swelling of more than 10%. 

And, the study showed no harm--that's all it was powered to do:

Contrary to common guidelines to avoid lifting with the affected limb, we found that weight lifting did not significantly affect the severity of breast cancer–associated lymphedema

Then, the JAMA study--weight lifting for women at risk:

The women had to be 1-5 years out, and in the conclusion:

The primary goal was to test safety of weight lift-
ing, not superiority 

But, she makes a good arguement for safe, slow, strengthening. It's just that the limitations of the studies get lost in the hype.

But, this is also in the conclusion, and makes a lot of sense:

These results are consistent
with the well-defined hormetic effect
of exercise training-small, slowly pro-
gressive increases in physiological stress
buffer the body's ability to respond to
infection, inflammation, and injury
through gradual adaptations to muscle
mass, metabolic demand on tissues, al-
tered microcirculation, reduced oxida-
tive stress, and improved inflamma-
tory profile. 

Kira

Kira, are you in full agreement with that the National Cancer Insittute's PDQ on LE has to say about exercise?

http://www.cancer.gov/cancertopics/pdq/supportivecare/lymphedema/healthprofessional 

I want to include the PDQ in an informational piece I'm preparing for our local hospital clinical director, who wants his PT manager to vet the PAL protocol that is the foundation of the workshop for personal trainers I'm bringing to town. My thought is to of course provide the various PAL studies, but also refer to the PDQ exercise segment, which is a concise summary of arguments in favor of exercise and references more than just the PAL reports.

Any quibble with the PDQ's exercise statements?

Thanks if you have time to review and respond.

Carol

Oh dear...I don't want to feel doomed, and I am going to GREAT LENGTHS to figure out how to re-start my fitness program in the safest manner possible!  Thanks for taking the time to sort through the research summaries. Very helpful navigational assistance!

Carol

carol57 - I've been lurking here for awhile. Add me to the list of those who have developed LE with 'only' SNB.

I was very active with weight lifting before BC.  I did BodyPump at Gold Gym's (a weightlifting/fat burning class) 3 three a week.  My PS surgeon assured me that I could do what I was doing before, it would just take me longer to get there.  *Sigh*  We all know what happened.  

This is what I have done:  I decided to go ahead and try the slow, progressive weight lifting with all the precautions ... the gloves and sleeves ... just because that is one part of my life that I don't want to give up.  If I have to ... I'll deal with it when it happens ... but I couldn't live with myself if I didn't at least try.  

I had my DMX in February of 2010.  I started the weightlifting in January of 2011.  For me (and yes, this is for me only ... we all know that LE manifests in different ways in different people) ... I swell the night after weight lifting but then it goes down.  If I stayed swelled for longer than 2 days, I know I've pushed it too far.  And I back off.  It's been trial and error but I'm doing OK.  And the near constant pain that I had when I started is gone.  I hurt with barometric changes and big temperature swings but the constant, nagging, hurting pain is gone.  Before starting the weight lifting class, I swelled up drinking a hot cup of tea, changing my cat's litter box and carrying in any groceries (I live alone and have no one to help me do these things).  Now, I can do those things without swelling.  It has worked for me thus far.  I hope it continues to ... but again, we're all different and we all know just when we think we have it figured out, LE throws us a curve ball.  

 For ME, it was worth the potential risks because it was a such a huge part of my life before BC.  

Thank you all for your wealth of information. 

carol56 - You can totally use my comments.

I lost my insurance about seven treatments in with an LE therapist.  I was there long enough to learn the MLD, have her show me some stretches and do the MLD and myofascial release on me.  The MLD that she did was AMAZING and I always left there feeling fantastic and swelling gone.  I don't have the magnificent results she had when I do the MLD but it does alleviate pain and it helps maybe a little ... depending on the day.  She didn't show me how to wrap ... and I NEED to learn how ... because I swell at night and I'd love to wrap after a day of weight lifting.  Her cost is out of reach for me without insurance ($400) a visit and I haven't found anyone who can help me in this area.  I'm going through all the bureacracy to try and see her at a reduced rate ... still in process and not happening yet.  So ... no I am not working with an LE therapist.  But I need to and I want to and I'm trying ....

Good for you for fighting to get the trainers in your area.  I'd love to do that too but didn't know where to begin.  You can show me and teach me a few things!  

You're being very wise and you're bringing others on board which is the most important thing.  I felt lost in a sea of despair with LE before I met the ladies on this board and on this thread.  They truly have been a lifesaver.  If we can turn and be lifesavers for someone else ... that's awesome.

Thank you! 

carol57 - On my post above "I couldn't find anyone to help me in this area" I was referring to another PT or OT who I could see that knows something about lymphedema.  She's the only one I've found so far within 100 miles.  I have a couple of PT's in my church and they don't know anyone at all.  They hadn't even heard of the one I'd found, which is one that was listed on the stepup/speakout website.  If it hadn't been for that site and binney & Kra who directed me there .... God knows where I'd be now, don't want to know.

The other thread about the acs & LE (way to go Kira!) ... I think a major part of the problem why it is so hard to find financial support for LE is ignorance and denial.  No one wants to acknowledge the prevalence, therefore, there isn't the funding.  

 And yes, chocolate!   

Thanks to ALL for everyone's concern ... it means the world to me ... it makes a huge difference for me knowing that I have all of you to lean on for support ...

Claire - Thank you for starting this thread ... much appreciation to you and everyone else that have offered so much valuable information about LE.

After spending a few days in the hospital, I was diagnosed with LE in conjunction with cellulitis.  I'm on antibiotics for the cellulitis, and have been referred to the hospital's lymphedema clinic. They have a clinic for this, but I was never told about any precautionary measures I needed to take to prevent it ???   What the bleep ???

I'm upset, angry, sad, disillusioned, and just want to cry ... and, the swelling and pain in my arm is almost unbearable ... why don't doctors automatically put on a compression sleeve for those that have a mastectomy and SNB?  And, why on earth didn't the doctors and nurses warn me about the possibility of getting lymphedema, which is incurable?

I had great news after surgery (no node involvement, stage ll) and was so relieved, but since then things have been going downhill a bit.  I was informed that I needed rads, along with chemo, since my tumor was so close to my chest wall (margins not very good), and that news caused me to become severely depressed and now the LE diagnosis?  I'm starting to wonder what's going to happen next!    

Olearca - it seems as though we have had a very similar experience with our doctors ... I was also told that it could be "nerve regeneration" initially ... and, now my doctors (who are also very renowned) are not as receptive to my questions and concerns ... I really feel like they've abandoned me ... why is that? They don't want my LE diagnosis to tarnish their impeccable reputation?  As you can probably tell, I haven't quite gotten over the "anger" part of it ...

I am also blaming my doctors, and blaming myself for not researching everything better ... If I only knew then what I know now ... but, I guess I just need to come to terms with it and realize things happen for a reason ...so, I'm now trying my best to turn this into something positive (it's just my way of coping with things ... looking for the light in the darkness) ... perhaps, it's fate that it happened to me so that I can share my story and experience with the hope that it can prevent other women from developing LE.

God bless all! 

Love~Peace~Joy

Trinity

Of all the things about living with bc, this is the scariest to me. I do not have it but I'm in the "watchful and worried" bunch. My highly-experienced, high-rep bs says "I don't talk to patients about conditions they don't have." Well, if you were a pediatrician, would you not talk to parents about immunizing against diphtheria? Add me to the list of readers who REALLY appreciate the wisdom on this thread, and the links to follow up information.

I had 6 nodes out, did not have external radiation, did have a seroma in the lumpectomy cavity before and after brachytherapy (diminishing now). Also have a history of arm swelling from insect bites (Even had to go to the ER once, 3 or 4 years ago, for that.)

I used to have good upper body strength. I was a long term kayaker and lifted weights... not this decade.   Still, skiing and gardening and miscellaneous resistance training have kept me somewhat strong. I did a lot of range of motion exercises that were recommended in my post-surgery packet (including wall push-ups) and have my ROM pretty much completely back. I don't think I overdid it, though. Like a lot of you, I want to work back into some resistance exercise to strengthen my upper body,and I REALLY don't want LE. I have really increased my water-drinking, post bc.

SO, Kira and Binney and other well-informed goddesses here, to avoid joining your club, should I:

• ask my PCP or MO, whichever I see first, how to get arm measurements done and followed up on? (I haven't had any.)
• get a referral to a PT before trying any weight lifting at all?
• take any special precautions before taking a long airplane flight?
• get an epipen to shut down any bug bite reaction that I might start to get?
• anything else you might do, in my shoes?

Thanks a million. Hey, do you think that in our daughter's time there will be some simple test for lymphatic function so we could KNOW if we were in the at-risk group or not?