Beware: Athletes who choose reconstruction may regret it

Fabulous story - thanks so much for sharing!  Stories like yours give hope to us all!

thank you so much for sharing your success story!  I was told, before surgery, that I wouldn't be able to do a lot of things after surgery.  I have been really into kettlebells, and have completely changed my body shape and health, losing 40 pounds and going down 4 pant sizes.  I felt GREAT!  My PS said I would probably not be able to do the heavy kettlebells I had been doing, only light weights (not effective for me to make changes I want).    I have been devasted by that ever since.  Not only that, but in spite of the fact that I should be at the lowest risk for lymphedema...I've got it.  SO, my life has changed from being actively doing kettlebells, running, doing dog agility trials, etc. to "avoiding high risk activities" like gardening and doing the dishes.  I cannot even wrap my head around that and I am devastated by the whole thing.  I still have hope that things will change.  I cannot figure out why some people breeze through this and some don't.  I have a friend who did  BMX with reconstruction and chemo and did the 3 day (60 mile) walk when she was barely out of chemo treatments.  She never missed a beat.  No problems whatsoever, and that was 10 years ago.  She runs, she does whatever she wants.  She is still doing great.  So, let THAT be an ENCOURAGEMENT to everyone! 

I wasn't supposed to get LE either... Only 3 lymph nodes taken. Frustrating.

Just because it didn't happen to you doesn't mean it is a myth. 

http://www.stepup-speakout.org/Controversial%20Stu...

Argynis:  I hope you'll listen to Dawn-Hope and NatsFan.  All you have to do is sit in a waiting room of an LE specialist to see some of the horrible problems.  And it's another thing like neuropathy - there's no cure!  I do have sleeves & gauntlets for flying as that's what the specialist recommended & it's not a myth.  Sounds like you've been lucky so far.

I am of course sorry for all of you that developed it and I have with no word said that lymphedema does not exist!

I have seen a Lymphedema specialist after my surgery and I own a gauntlet and a glove. But fear will not rule my life and I will not take precautions that do not make sense to me. If my lymph system is on the edge of tipping over and I get it then there is nothing I can do against it anyways. I can wear my gauntlet in case I develop lymphodema.

Sorry, but being a scientist I am always very critical when it comes to statements like the one about that the air-pressure change in a plane will trigger lymphedema for everyone who had lymp nodes removed. If your lymph system is not working well already before surgery and you got swollen limbs on a plane before then it is likely that the situation is worse after loosing lymph nodes and a plane trip may trigger it. The air pressure change in a plane is similar to climbing a 2000-3000m mountain - so really not big - using that argument to "force" (or better scare) every person that had lymph nodes removed to wear a gauntlet just does not make sense to me. 

If you think you should wear one to be safe then do it - I don't want to be a missionary. Just don't forget to be critical and don't accept everything people tell you without thinking about it.

For the scentifically interested I'd recommend reading a peer-reviewed publication in the Journal of the American College of Surgeons from Scientists of Memorial Sloan-Kettering Cancer Center:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC365257...

Patients with a history of lymph node dissection are often told to avoid
air travel or wear compressive garments (even if they do not have
lymphedema) when flying. Unfortunately, as with many other recommended
preventative measures, this guideline appears to have little scientific
evidence supporting it.

Right on Dawn.  Some of us are willing to try many things to avoid what you and others have to suffer every day.  And thank you for sharing your experiences & advice.  It's not a fear factor w/me - just prudence.  And I agree - these boards are about encouraging women who join up to understand WTH has happened to our lives just with BC, let alone any long term SEs.

My WoundCare/LE specialist did say that hopefully they're learning more and maybe one or two 'sticks' a year or one or two blood pressure cuffs wouldn't hurt.  So I do occasionally let the techs do that.  But he also confirmed that most docs get only 15 minutes of training about LE in 7+ years of med school.  I saw a great lecture by a Stanford doc that reinforces those numbers.  As Dawn-Hope says, we can find proofs for anything.  And we each choose which path we want to follow through this BC  maze - hopefully after considering all the evidence.

As for the NIH study - here's the key.  NO ONE's  really knows what might trigger LE, let alone in any one given person, so no one knows what to prescribe to prevent it.  Hypothetically now (not personally) - Are you allergic to adhesive tape?  Do you get hives from certain antibiotic? Do you eat prudent meals & walk 3miles a day & still have high blood pressure?  Do you follow the precautions and still get LE?  Or toss caution to the winds & don't get LE.  In spite of all the science in the world - we don't know lots of things until they happen.

OK - I'll get off the soapbox now.  Not trying to offend anyone.

Whoa, Argynis - no one said that flying will trigger LE for everyone who had had lymph nodes removed.  Also, no one said that you thought LE was a myth - as Georgie said, we were responding to your statement that you thought that the "airplane thing" was a myth.  

And, you're not the only scientist here - many of us are science, technology and research professionals.  Those of us who have LE have unfortunately had to spend a lot of time researching LE because there is a lack of information in the medical community about LE, and many of us now know quite a bit about LE.  We also know how to read medical journals and studies.  

Why do we do this? Because many of us were given no information by our surgeons or at best, misleading information, about LE, and because of that, many of us inadvertently engaged in very risky behavior.  Those of us who have LE will never know whether we could have avoided LE if we'd been better informed and taken a few easy, painless precautions.  What's the harm in encouraging other women who are at risk for LE to become more knowledgeable about LE?  That way, if they make the decision to forgo simple precautions, they are making an informed decision.

You said that you don't let your life be ruled by fear.  But as Minus said, there's a difference between fear and prudence.  The chances of my being in a car accident are small, yet every time I get in my car I buckle up.  Would you say that fear is ruling my life, or am I taking a simple precaution that might save me from injury or death sometime in the future?  I wear sunscreen because I don't want skin cancer, even though most people will never get skin cancer.  Again, would you say that fear is ruling my life, or am I simply being prudent?  No one knows what causes many illnesses.  We all know individual stories - the vegan teetotalling marathoner who has a heart attack, while the person who smokes, drinks like a fish, and eats nothing but fast food lives into their 90's.  But my guess is that most of us don't throw caution to the winds because no one knows why some people have heart attacks and some don't.  We try to exercise, eat a healthy diet, and try to limit or eliminate smoking and alcohol in an effort to lead a healthy lifestyle and avoid future health issues.  Is that being prudent, or is that letting fear rule our lives? 

You said, "I can wear my gauntlet in case I develop lymphedema."  Dealing with LE is so much more than just having to wear a gauntlet.  LE is a chronic condition, and requires daily management.  Once someone is dx with LE, there is no cure.  With luck and lot of work, it can be managed, but that's as good as it's going to get.  It's also expensive to manage - many compression garments are not covered by insurance or only covered partially. Short-stretch bandages used for wrapping are very expensive and rarely covered by insurance.  Co-pays for sessions with a LE therapist can add up in a hurry, and many insurance plans allow only so many visits in a year, leaving us no alternative to either paying out of pocket when additional treatments are needed or going without.  Plus there's time lost from work for appointments, and time lost from life because of what it takes to manage LE. 

I sincerely hope your strategy works for you and that you never develop LE.  But please don't act like the rest of us are foolish fearmongers who believe every little rumor that goes around.  We live the reality of LE every single day.  All we want to do is to try to educate others in an effort to keep anyone else from having to live with LE. 

Hi everyone,

Just new to this topic since I only log in if I need to find info. I am a rock climber (not professiona) and hiked and did yoga before I was diagnosed. I haven't climbed nor hiked since my surgery on 10/7/13. I still have my expanders and will see PS on 2/10/14. I've always had some tenderness on the side of my torso near the TS and just recently started having peripheral neuropathy on my left arm. I started regretting having TE but then I thought I don't want to end up having a concaved chest without reconstruction which I've read somewhere that happens for a small body frame like me. I have been going for regular PT since 12/4/13 and do get some relief when I do the exercises and recommended stretches (which I'm not consistent but will do now before I see PS) plus light yoga (no downward dog or any poses that I have to be on my tummy or arms). Breast surgeon is the one who referred me for PT when she saw me a month after surgery. I only got a little exercise booklet from the hospital which I didn't see until just before post-op visit with breast surgeon. Nothing about PT was mentioned when I first met the surgeons. I relied on Dr Susan Love's breast book even though I wasn't able to read it thoroughly.

Last 1/6/14 I told my oncologist about my arm and I got referred to lymphedema therapist which has yet to schedule my 1st appointment.

After reading the posts here, I'm thinking does the breast size, how much expansion done, what anatomical structures moved/cut/transposed or how many nodes taken during surgery have anything to do with discomfort and issues mentioned here. I only let my PS expand me to a total 130 cc because of the discomfort during expansion. I am 5'1 with 34A and I don't want to get any bigger. Ever since I met my PS before the 10/7/13 surgery, I told him I rock climb and hike and I don't want those activities impeded by whatever surgery that's going to be done. I told him I don't want any flaps, don't touch any muscles although I know the TEs will be placed under the pecs and I don't want to go big. Basically I told him what to do or not to do. What other issues I need to know so I can formulate questions to ask PS when I see him next month? I'm scared more about the reconstruction than the mastectomy nor the cancer.

Thanks MinusTwo for the info. I will look into the threads you mentioned.

The sad thing is, lymphedema risk is one of thousands of huge mysteries around this disease. My PT recently informed me new research indicates wearing a sleeve without known LE could actually weaken and precipitate the condition. There are no easy answers, and I've grown darn tired of people with medical degrees telling me to "go with my gut."

MyraVH - That's great!  I had an LE OT perform myofascial release on me too and the results were instantaneous!  Before it was done, I couldn't lift my arms over my head but afterward, I had full range of motion.  While it was painful at first, the effects were amazing.  So glad you were able to find something that helps you.  

Gran - YES!  And a great big CHEER!  

SO HAPPY that this procedure went well for you.

You are a hero to me … always have been … and now you've done this … hero.

Please do keep us posted and kick some ass with those weights, with the bench press, with the fighting … can't wait until you get your life back too.  Please keep us posted.  It gives me hope that someday I could get my life back too.

So thankful and happy you're doing so well and already can feel a difference.  

Hooray for you Gran! So happy for you!

And thank you 100 times for starting this thread. I am glad I am waiting to decide for sure what path to take. My skin sparing dmx went well, and I am slowly trying to get into shape. I plan on making a decision by the end of the year so i can proceed one way or another towards the beginning of next year. This is such a tough journey, that should not be made worse by surgeons or anyone else pushing you in one direction or another. 

I am glad you are feeling better already!