Yet Another Anxiety Spiral

The sooner you realize that getting lymphedema is not something you have any real control over, perhaps the sooner you can move on.  I've always been fond of self talk so I would tell you to look in the mirror and tell yourself, "I have no control over this aspect of my life so I will take a deep breath with these recurring thoughts and focus on something more productive."  Of course a small amount of Ativan may also help when your head is spinning ;-).  It's simply out of your control.

TwinMamaHeather, It is incredibly smart to be aware of LE risks and early symptoms, because your instinct is spot on that an early 'catch' can give you a leg up on helping to prevent progression.  

The strange and frustrating trait of this condition is that it manifests so irregularly from person to person, so unfortunately, there's no 'standard' symptom(s) that raise a reliable early warning flag.  That said, there are some common sensations that signal possible LE before there's any visible swelling. These include feelings of heaviness, sometimes a tingly feeling, sometimes a burning sensation, and often a vague ache.

I learned I had LE of the arm after seeking help for what I feared was LE of the trunk, on my side under the axilla. I could see that side swelling and it felt kind of raw and burning, I suppose just a general irritation feeling. So I had an evaluation and the clinic measured my arms as well, using a perometer, which is a very accurate measuring device. You could have knocked me over with a feather, as they say, when I learned that my sentinel node biopsy arm had 10% greater volume than my other arm; and my unaffected arm is my dominant one, so by rights it probably should be naturally larger than the arm that had developed LE.  I would have said I had zero LE symptoms in that arm!  

But after the diagnosis I started paying more attention and began to sense some of the common LE symptoms, especially heaviness and the ache. Over time my truncal swelling subsided and wearing compression shirts and camis has helped with its tenderness; it only occasionally flares up these days.  The arm almost never has visible swelling, but I have an aching feeling almost every day. It always feels much better when I wear my compression sleeve and gauntlet, another confirmation, I suppose, that the ache is from LE and not some other cause.

There is some evidence from Nicole Stout's research that getting into compression garments at the first sign of LE can be a very valuable strategy. Her study concluded that early compression can reverse early LE, although she did not have a control group, and it's not clear how many of her patients' swelling consisted of post-surgical swelling that was never LE at all, and would have reversed itself within a few months with or without compression. That study inconsistency and a general lack of evidence to support compression for latent (non-visible) LE means that there's no uniform opinion on whether compression should be used when there is no visible swelling.

I think your best approach is to channel your focus (and worry! into risk-reduction strategies. You're exercising daily (bravo!!), but are you on top of the best practices for safe exercise for women at risk of LE after BC treatment? There's no clinical or research-based consensus on whether to wear compression garments while exercising if you do not yet have a diagnosis of LE, but many women choose to do so, especially if lifting weights or doing highly repetitive arm movements against even minor resistance.  There's some controversy about wearing compression while flying if you don't have a formal LE diagnosis, but many women do so, as an abundance of caution.  And then there's the standard preventive behavior you no doubt know of--skin care, avoid saunas and hot tubs, treat even minor cuts and scrapes promptly, etc.

If you haven't explored stepup-speakout.org, there's a ton of very helpful information there about symptoms and prevention strategies. I like to send exercisers to a document meant to be shared with personal trainers, fitness instructors, yoga and pilates teachers: http://stepup-speakout.org/Trainer%20doc%20for%20...

...and my last thought is that if you can find a way to nudge your concern about LE from anxiety to something less consuming, like simple symptom awareness and focus on risk reduction, you'll still be in a good spot to catch LE early if it develops. I hope you never get it --my mother had all her nodes removed with her mx 40 some years ago and never got LE, and in general 60% of women do not get it, so it's not a 'given.'  But if you do, take heart--you'll catch it early and it's highly likely that you'll be able to manage it so it's minimally intrusive on your life.

Hang in there!

Carol

twinmamaheather, I think--well, I suspect, because no one really knows-- that the reason my LE is so mild is because I was fortunate enough to start using compression and doing manual lymphatic drainage when I had symptoms so nuanced that I didn't realize I had LE of the arm.  That was just dumb luck in my case, but you're incredibly aware of what to look and feel for, so you'll be able to begin working with a lymphedema therapist at the very earliest sign of trouble.

As for confusing 'normal' post surgical symptoms with LE ('normal' in quotes because really....what the heck is 'normal' about those?  My gosh, we're asked to feel and take in stride a bizarre fiesta of after-effects!!!), that's a really good question.  I have numbness in the lower part of my axilla, in part of my upper arm, and in a small area on the side of my trunk below and next to the axilla. That numbness is surely the result of nerve damage from my SNB and it has not changed a bit since my surgery in mid 2011. The ache and heaviness I feel in my arm runs along the whole arm, although it's more pronounced in my upper arm. When I should be wearing compression but am not (I sometimes skip it when I shouldn't, like every other human being in this forum) I know the error of my ways because I develop a subtle burning sensation, mostly in the upper arm. Sometimes I swear that if I shake both arms, my LE arm feels more jiggly, almost like I can feel the added liquid within.  Or am I imagining that, just because I know there's more lymph on that side, even though I can't see it?  I guess I no longer doubt my ability to let suspicion feed my imagination.

Here's a link to an interesting recent study (Sept 2012) by Kilbreath et al about swelling in the first year after surgery: http://www.ncbi.nlm.nih.gov/pubmed/23494582

This study was part of a larger one that was looking at the effect of stretching and resistance exercise (weight lifting) on lymphedema risk after early treatment for breast cancer. 160 women had baseline measures 4 to 6 weeks pos-op and were randomized to either an exercise group of the control group, and they balanced their groups to equalize the number of SNBs vs. axillary node dissections. The exercise group continued their intervention (their exercise program, which was led by trainers) for 8 weeks. All the women were assessed at baseline, on completion of the 8-week intervention period, and at 6 and 12 months of follow-up. They researchers found that there was a high incidence of swelling that reversed itself within the first year, and they are suggesting that LE diagnoses be made only if swelling continues beyond 6 months.  They found that the highest risk for swelling--swelling that showed itself to be temporary--was taxane-based chemotherapy, which they note 'causes preferential transient swelling in the arm on the side of surgery.'  They also noted that the intervention group was much more likely than the control group to experience a resolution of their initial swelling. The study concludes that 'factors that might help prevent or resolve swelling in the first year and prevent its recurrence in the future include  resistance exercise.'  

In several other studies, including those led by Dr. Jane Armer (herself a BC survivor with LE), the early symptoms of heaviness, ache, and very subtle swelling (jewelry is tight and I haven't gained weight) have been shown to be very accurate predictors of near-term onset of LE, but I don't recall if her testing of those predictive symptoms was divided into immediate post-surgical periods and later time frames.  I'm an amateur reader of research studies but I've been looking at LE studies quite closely for the past two years, and I'm not willing to conclude from the Kilbreath study that lifting weights prevents LE. Fortunately, the authors don't say that either--just that resistance exercise seemed to coincide with the resolution of post-surgical or taxane-induced swelling among their intervention group. I think it's likely that Dr. Armer's predictive symptoms are those that signal the slow development of LE after that confusing period post-surgery.  So, if I were in your spot, I think I'd be investigating a good program of resistance exercises using very, very light weights (and if you PM me, I can get you some helpful documents by email), and keep up your stretching exercises. You're not experiencing any visible swelling, so you would be doing this not to resolve post-surgical swelling, but with your rads you will adding more insult to your lymphatic system, perhaps inviting swelling akin to post-surgical swelling (maybe--I'm not sure about that). Multiple studies have shown that there's no added LE risk from weight training that's done following LE precautions (light weights at first, adding slowly and in very small increments). And common sense says that if lifting unaccustomed heavy loads in daily life signals stress to the lymphatic system (inviting LE to rear its ugly head), then we help reduce the LE risk if we train our arms and trunks to become accustomed to lifting heavier loads-i.e., weight training.  Of course, check with your rad onc about doing this during treatment.  I did not have to have rads so I've no experience there.

Lots to think about, isn't there?  What I like about exercise, even though the studies cannot guarantee that it helps reduce or prevent LE, is that it's healthy for us in many ways and based on the research, we can highly suspect that doing a good, LE-safe program is actually DOING something in response to surgical, chemo, rad events that we cannot control.  To me, stress is the result of distressing events going on in my life that are out of my control.  Taking control in some way --in my case, the weight lifting and exercise, which believe me was not my preferred way to spend time before the whole BC story--is my way to punch stress in the face.  I rather imagine that the exercise-induced endorphins help in that regard, too!

Carol

Not knowing is what can make many of us obsess and anxious.  For those of us who are analytical thinkers, we can think ourselves into a panic.  We learn, we read and instead of becoming more informed, we begin to obsess.  I know this feeling well as I've been there before.  Every physical aliment that came up for me after BC treatment had me wondering if it was forever.  There was knee pain from a fall, foot pain from break, finger pain, etc.  Physical situations before BC would be shaken off knowing that eventually things would heal.  After BC, we are faced with the reality that somethings don't and that our bodies are forever changed.

This can be extremely frightening to know and accept and to realize that after everything we have already gone though, we may have to face more is sometimes too much for our minds to deal with.  When I saw this post, what jumped out at me wasn't the risk of Lymphedema as much as the anxiety ("I am driving myself insane really," "Every day I stare in the mirror at my arms," " I just
can't get this out of my mind") and what seemed a bit more than just being informed. 

that is very true, binney. a year and a half later, i am much more relaxed about the whole thing, and just that very fact seems to have reduced the swelling in my arm, to a moderate but noticable degree. and so then when i read the link carol mentioned, the part about where it said taxane therapies, which i did recieve, made me anxious and nervous again. i had to talk myself out of that! and really tried to convince my 'listening' mind, as opposed to my 'chattering' mind, that i am ok, and will be ok. cause, i know how to take better care of myself, and my lymphatic arm, much better now, on a daily basis. a fine balance between being vigilant & relaxed....not that i am schizo, but our minds are a very powerful instrument!

so....to be clear.....is there any way to know if it is "real" LE, or post surgical swelling?  If it lasts longer than a year, it's LE?  I developed LE about 7 weeks or so after surgery, and it's very mild.  Have been trying to get rid of it since I realized I had it, in mid December. I am grateful that I saw a CLT within about 24 hours of noticing symptoms, and she had done baseline measurements when she met me 3 weeks before.  Just hoping it could possibly go away?  I didn't have swelling IMMEDIATELY after surgery, so could that be considered 'post surgical'?   And, if it does, does that mean I would still be at higher risk for developing it "for real" than if I had never had these symptoms to begin with? 

mnm, good question! I am traveling for work today but tonight I will have hotel time and I will do a close read of a few relevant studies to see if I find any insights. I know there will not be a crystal clear answer, but let's see what I can find.