Preventing Lymphedema

Hands up for the folks who know what lymphedema is...?  Just as I suspected.

I didn't know or care about it prior to breast cancer diagnosis.  How many of us even know what the lymphatic system really does?  Circulatory, yes.  Vascular, okay.  But do you know where your lymph nodes are and what they need from you?  Not I.  Nor most oncologists.  That's right, key doctors treating your breast cancer are largely ignorant to it's prevention.  Don't expect to get a lot from them on this topic.

Of course your oncologists know what lymph nodes are, they couldn't pass medical school otherwise.  But I consistently found that lymphedema and it's prevention falls far into the muck.  There's no grey area here like certain supplements or acupuncture where a few doctors understand the value-add to their responsibilities.  When it comes to lymphedema, don't be surprised to hear "Go to a specialist." or "Didn't I give you that business card?"

So why do you need to know?  To be succinct, this picture says it all.

Taken from Lymph Notes, by Amy Storer, this photo illustrates what happens with significant backup of lymphatic fluid.  You want to care because it's preventable.  You want to prevent it because once it 'blows up' to this degree, it doesn't stay away.  There's relief, of sorts, but the focus is deterrence. 

I'm going to share some alarming information, but please take it in stride.  There's no need to follow in my footpath which is unnecessarily common.  I was more freaked out about the likelihood of my arm exploding than cancer returning.  That's right.  I had Stage 3 breast cancer but fear of this, well deformity, was worse than recurrance.  It doesn't need to be.  It. Is. Preventable.

Risk
Anyone can get lymphedema, but chances are that if you exercise and eat well, you won't.  Breast cancer patients are at higher risk from surgery (where lymph nodes are removed), radiation and chemotherapy.  Each adds more risk, so the less treatment, the less risk.

In my case, I had 7 lymph nodes removed from my armpit.  3 were positive.  Good news is, there have been great strides.  My surgeon said that in the '80s, standard procedure was to remove all lymph nodes, regardless.

My breast and armpit were radiated as well as the lymph nodes above my collar bone because that's where my cancer might have spread next.  According to Storer's article from 2006, MD Anderson believes "15% of all women with breast cancer will develop lymphedema over the course of their lifetime."  I am confident this is outdated data.  I'm also confident that this figure will reduce dramatically over the course of my lifetime.  I put money on it.

Firstly, key oncologists are getting switched on to treating cancer more holistically and taking an integrated approach.  Did you know that in China, they don't treat chemotherapy without acupuncture?  It's standard protocol.  3000 years of proof.  Acupuncture reinforces chemo's effectiveness while easing it's side effects.  Secondly, there are some great resources out there.  Problem is, that currently one still must hunt for them.  I admit, I'm in a Foo-Foo city with more access to resources like this and still it's not always easy.  So I empathize.  But perhaps you can gain peace of mind for right now knowing that 1) it's preventable and 2) it's not rocket science.  I'll share more in future blogs, but here are a few tidbits.  Please write me a note if you have questions.

What It Is
I'm not an expert, but your lymphatic system runs in parallel with your vascular system as a conduit for toxin removal from cells.  Blood takes nutrients to your cells.  Lymph fluid carries it away.  It's very protein rich, so if it becomes stagnant and gets trapped for too long, it can become infected with bacteria and cause cellulitis.  Cellulitis is an inflammatory skin infection.  It can present like a bright red splotch or a narrow line.  Again, I'm not an expert, so ask your doctors, but it seems to me that if you are getting cellulitis from trapped lymph fluid, then you've been experiencing symptoms for a while.  I don't believe it just hits you like Wham!

My fears of Balloon Arm have dramatically subsided.  Just like cellulitis, I don't think it'll hit me out of nowhere with a Kaboom!  Instead, I've learned to pay attention to all the signs.  Signs like when my arm feels heavy and/or numb.  Sometimes I'll wake up in the night from it feeling like it's fallen asleep.  For me, my body often shows signs under the armpit, in that area above my bra.  That's where I collected edema fluid from surgery and it's where I always feel it fatigue or bloat first.  Exercise and heat taxes the circulatory, vascular and lymphatic systems, so when my arm rubs against this skin while I'm walking, I can tell it's time to ease-off.

I am not interested in getting lymphedema.  So when I start to feel that heaviness and my arm gets numb, I make sure to take a break from what I'm doing.  Like now.  I've aggravated my arm from too much sitting and computer work today.  Returning back to work, it's been more common again.  My forearm is irritated, numb and like it's slightly ringing inside.

I'm going to put my 'sleeve' on, go for a walk and do my lymph drainage and breathing exercises before bed.  Consider the sleeve an Ace bandage providing compression to my arm from the wrist to shoulder.  It gives the lymph system a break.  It feels really good and relieving.  I'll be fine, but I'm done for today.

I will share more on the exercises I do.  I have an entire booklet on all the Do's and Don'ts from St. Mary's Lympedema Outpatient Prevention Program.  In the meantime, checkout their datasheet or My Village (to the right) for a url link to the St. Mary's site and services.

To be continued...