question about cuts, scrapes, etc. and infections/lymphedema

I hear you, alrz.  I was one of the lucky ones, I guess.  My PS warned me that "Your risk is small, but it's not zero."  He told me I should "take precautions."  When I asked what precautions I should take, he said, "You know...when you are doing high risk behaviors, make sure  you take precautions."  High risk behaviors?  "yes....like gardening, doing the dishes, etc."  WHAT?  THOSE are high risk behaviors?  Ugh!  I didn't even know what LE was, let alone have any idea how to change my life to avoid it. 

I am no expert, but my understanding is this (anybody who wants to chime in to correct me....I won't be offended).  You need an intact lymphatic system to "take up" lymph fluid and drain it out of your body.  When something occurs to 'invite' more fluid to an area, you need those lymph nodes to help you drain it back out.  The lymph system has no 'pump' to move the fluid around.  It counts on your muscle movement to move the fluid.  If something should happen, like a cut, overactive muscles, etc, ....extra lymph fluid will go to that area.  Right now, your body seems to be able to drain it back out without a problem. BUT....because you have a compromised lymphatic system, there could be a time when it can't. It is then that the body won't be able to drain that fluid away and it could stay and get infected.  This could happen at any time.  Now you have LE, and all the crap that goes with it.  It may never happen, and it may happen tomorrow.  Nobody really knows why it happens to some and not others, and unfortunately, practitioners don't seem to know much about it at all. 

Does this answer your question?  I am still trying to figure it all out, too.  It's a real pain.  The other thing I don't understand is how it can seem to get a little better over time for some.  Do some people grow new pathways?  Can the lymphatic system repair/bypass the missing or damaged nodes? 

So much to learn! 

alrz, your very intelligent questions strike at the heart of some problems with understanding LE and its risks: what's not known, or not well established via good medical research, would fill an encylopedia. So we can talk about a lot of probable causes and risks, but they don't apply universally.  Dr. Jane Armer, one of the preeminent LE researchers (who has LE after breast cancer herself), estimates that generally 40% of women who have had breast cancer treatment(s) will get lymphedema at some point, not necessarily within a year or two.  Many women with BC have multiple treatments that assault the lymphatic system: surgery, of course, including losing a few or many nodes; plus radiation therapy directly to the nodes or in some cases to the breast, but the rads spill over to the nodes. There's also some research suggesting that chemotherapy may damage the lymphatic system. I know you said that your node removal was not part of any cancer treatment, so these BC treatments are not part of your experience, but think about this:  60% of women receiving some or all of these treatments never get LE!  My own mother is a good example. She had complete axillary node dissection when she was 38, coupled with rad dosages that are much more significant and much less focused than what's given today.  She's now 85 and has never had any sign of LE.  I on the other hand had prophylactic bilateral mastectomy and sentinel node biopsy to rule out any trouble from one question mark on my imaging and biopsy work, and I had no other treatments. Yet here I am, with LE.

So, you might imagine that there's no definitive answer to the question of whether a cut or a bug bite or lifting weights in the gym will cause any one of us to develop LE, because the whopping big unknown is why, despite some rather draconian assaults to the lymphatic system, some people never get it, yet others do develop LE after seemingly minor lymphatic damage or disruption.

Your research about the protein-rich fluid is spot on--that's true of everyone's lymph, which is the fluid traveling through the body in our alternate circulatory system called the lymphatic system. When there's a disruption --missing nodes plus scar tissue in the surrounding area that comes after any surgery; or scar tissue from radiation; or, in the case of primary LE (from birth), missing or undeveloped lymphatic vessels--the movement of lymph becomes sluggish. If you lost one or several nodes, you've also lost some of the body's ability to remove invading organisms. So, the sluggish movement gives an invading organism extra time to flourish in a petri-dish-like environment, and your nodes' filtering capacity is diminished. Perhaps that helps explain why we're at risk of infection that can spread rapidly through internal tissue, if we've had any damage to our lymphatic system.

Your post describes the loss of one lymph node, and that catches my eye because I thought when I went into surgery that I was scheduled to lose one node, too, in the sentinel node biopsy.  It turns out, however, that I lost five nodes, because the tracer dye injected in the area of suspicion in my breast traveled directly to not one node, but five, in wagon-wheel fashion.  I now know that it is quite common to lose multiple nodes in a 'sentinel' node biopsy.  To help assess your LE risk, if you are not 100% sure that only one node was removed, you might check on that.

Many studies have been done of LE risk after breast cancer, with fewer done to profile LE risk from other causes, including treatment of other types of cancer. Generally, the studies do find that risk is lower with just sentinel node biopsy accompanying mastectomy or lumpectomy, although I cannot recall a study that looked at literally just a node biopsy. I'm pretty sure your risk is quite low, but having said that, I also know that the studies have many unfortunate limitations that make it difficult to draw reliable conclusions from the body of research. Researchers have a stunning lack of uniformity in their choice of diagnostic and measurement criteria for identifying LE. For example, how much swelling equals an LE diagnosis? Do we compare arm size to the unaffected arm, or to the same arm if baseline measurements were taken before surgery? How do we measure--with a tape measure or a more accurate device such as a perometer?. If an arm measure is compared to the same arm measure taken before surgery, what if the patient gained or lost a lot of weight: will the LE assessment be accurate? If an arm measure is compared to the unaffected arm, what if the unaffected arm is the dominant arm: might the comparison arm be naturally bigger, masking the possible swelling that would signal LE in the at-risk arm?. Studies also tend to have amazing disparities in the patient follow-up period. All of this suggests that it's really, really hard to have confidence in research conclusions, and unfortunately, many well intentioned surgeons and physicians grab onto the lower end of the risk conclusions because they understandably don't spend their time poring over the LE research articles.

So...can you see more reasons why it's very difficult to say what the LE risk is, even after losing just one node?  

And then there's the question of how even the best researcher would try to find out if bug bites, cuts, burns, or even air travel *really* does put us at risk of LE. If you had the time to read the last few years' posts in this forum, you'd find a number of reports by members whose LE was triggered (or seemingly triggered) by a bug bite, sunburn, cut, etc. But researchers have a very hard time confirming that kind of risk, because it would be unethical to take a group of women who had BC surgery and other treatments and ask us to stick our arms in a mosquito cloud, or get an intentional sunburn, just to find out if the risk event triggers LE.  So to most of us, the stories--anecdotal evidence, if you will--provide the best information we have about the risk of cuts, scrapes, burns, and the like.  A noted breast surgeon published an article in a well respected cancer journal last year, essentially calling our risk-reduction behaviors (no needles or bps, for example) 'myths' because they've never been proven to reduce any risk.  Lots of us, including me, wrote her and the journal some pretty hot responses to say that if you cannot ethically demonstrate we have no such risks, and if the anecdotal experiences of our community say the risks are indeed real, you simply cannot espouse withholding information about LE risks and potential risk-reduction strategies because you think it would make us worry too much!

More food for thought on the bite/cut question: It is thought that we can have up to 20-30% added lymph volume in our limbs before swelling becomes visible.  That's why early symptoms of LE include a feeling of heaviness, aches, itching, burning...i.e. sensations that disclose added lymph, even when you cannot see any swelling.  Maybe when we perceive a bite or a cut to have 'triggered' LE, we already had latent, or stage 0 LE and didn't know it.  Maybe when a bout of cellulitis 'triggers' LE, it's because there was already a surplus of lymph --the latent stage--and the infection brought so much added lymph to the area that the LE went from latent to more developed. My guess is that research will never give us that answer, one way or the other.

And finally, the exercise question. Weight lifting works to develop muscle strength because we use a combination of weight and reps to work the muscle to near-exhaustion, which has the effect of breaking down muscle fibers, and the subsequent healing process rebuilds the broken fibers plus adds more of them. It's intentional injury and the body responds in kind, sending lymph to the rescue. The same is true if you simply pick up a heavy box or a child using an arm that's not accustomed to the weight.  That's why resistance/weight training and any heavy lifting adds LE risk, and of course more so if you have more assaults to your lymphatic system, and/or if you have latent LE without realizing it.  I want to paddle my kayak for a week each year plus lots of days throughout the summer, and I want to pick up and play with my grand kids without fear. So I am in the gym twice each week lifting weights, to condition my arm and trunk to lift heavy loads without triggering the body's stress reaction. I started the training about 18 months ago and now I can bench press 50 lbs with ease, and I can do bicep curls with 20 lbs per arm. There's some added LE risk that comes with weight training, but you can limit that risk by taking it slow--start with very light weights and add in small increments, gradually.  Here's a resource that you can read to learn the exercise approach when you have or are at risk of LE: 

http://stepup-speakout.org/Trainer%20doc%20for%20S...

The document is quite detailed, and as Ruthbru says, upper body exercise is beneficial for many reasons. I'd disagree on any soreness being OK--soreness means we pushed to the point of an inflammatory response, and the LE-safe approach to weight lifting has us stopping short of pushing to soreness, to minimize the body's release of lymph in response. 

Sorry for being so long with this post, but alrz asked several very good questions that are best answered with a lot of detail.  Alrz, really I suspect your risk is minimal, but it's very smart to learn about LE cause and effect so you can decide the best approach to risk reduction for you.

Carol

Thank you so much for all that great info, Carol.   :-)

alrz, I had the same questions.  When I met with the LE specialist I asked her about those things, and what she told me about bites/cuts etc was that we all have germs on our skin, things like staph and strep, even right after washing. And any break in the skin (even a bug bite) allows the germs a way in.  Normally our bodies can deal with that no problem, but when the lymphatic system is compromised, sometimes the germs get a foothold and cause infection.  

And the reason for avoiding excess heat (saunas, hot tubs, etc.) and burns/sunburns and overexertion is because all these things cause more lymph fluid to rush to the area, and if we are compromised it may not be able to handle that.  I guess that makes sense. 

Jenn, that's a crystal clear explanation of something I'd not thought about.  Thank you!

just wanted to mention thet having one node out for biopsy is still different than a sentinel node biopsy with mastectomy because the breast tissue itself contains many lymph  nodes.

kareenie -  A node does not necessarily have to be removed to biopsy it.  Mine wasn't - it was a Fine Needle Aspiration/Biopsy where only a needle was put into it.  LE can also develope after any surgery even with no node removal or with a traumatic injury.