Study: Lymphedema Risk & Blood Draws, Injections, BP, Air Travel

I have never allowed any blood draws, BP, or injections. I was well within what I should have been in with BMI. Very active and healthy other than some upper back arthritis. Had not flown. But m LE presented 6 weeks into adjuvant 12 weekly Taxol (9 weeks post UMX) and before Rads. Had 19 nodes removed - all pos. In these almost 6 yrs since LE DX I have had no issues with cellulitis though have had had quite a few cut/punctures/scrapes/etc. though I am very active 'outdoors'. (I use hydrogen peroxide, not antibiotics.)

We are each so unique and so different. There is no 'One Size Fits All' and it is important for us, individually, learn what is best for us - not what someone else says what to do.

Yup - I did have 19 nodes removed BUT that is ths only 'thing' listed in the short statement without actual stats listed.

It has to be remembered that LE can develope after any surgery anywhere on on the body or after traumatic injury - it is not exclusive to BC. I have a friend who deals with fairly extensive LE in her lower leg after noninvasive knee surgery. I was told 40+ yrs ago after a fairly serious riding injury I might developed LE is my lower leg - didn't happen thankfully but was a possible.

I was not 'large'by any means, fit/very active, had not had radiation, no cellulitis and in the almost 6yl yrs since LE still have not had any cellulitis. What is scary to me is that 'they' seem to be saying go ahead and do BPs, blood draws, injections even though there is a potential.

Oh ha well - my thoughts and what I HAVE experienced myself.

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BarredOwl

Hi SummerAngel:

Thank you for posting the article. The article also has a good bibliography of previous studies. The correlation of arm swelling with cellulitis reinforces the need to take precautions to prevent injury and infection, and I tend to fall down a little on this (wearing gloves for house and garden work).

I also had SNB on both sides. It takes some work and insistence to avoid blood pressure readings, blood draws, and IVs on the arm. I know it shouldn't bother me, but it makes me feel like a butthead when I insist on a different location or decline a procedure on the arm. Like I am imposing on them or something. Despite the findings in this study, (butthead that I am), I will probably continue to try and evade arm procedures just in case. But I may feel a little better about the times I don't succeed (e.g., colonoscopy at a regional hospital with continuous bp readings throughout the procedure on arm, and IV placed in hand under hospital policy that SNB does not require another location for IV).

BarredOwl

After LE has developed, why would it be considered OK to do any 'invasive' procedure to the arm? Doing a blood draw is invasive as the skin is compromised by a puncture, potentially causing an infection/cellulitis. BP cuffs (especially the machines) can be quite over inflated/high pressure which logically (to me anyway) could cause more issues. Injection are putting 'something' into the body that could cause a nasty reaction - so why take a chance.

I have only had 1 issue with a 'stupid RN (hae nissues ver seen him before) who insisted he had to do my BP in LE (right) arm because he "had his office set up to use right arm only for BPs". I got up and walked out of his 'office', meeting one of the RNs I knew. We went back in and she 'instructed' him that he would use my left arm and stayed there. When I left to go to see the Orthopedic PA, she stayed behind to have a 'discussion' with him. Never saw him there again.

Blood draws - never had anyone want to use my LE arm. I do have great veins so not a problem (anyone who can't hit my veins should go back to school for more education. But there are many veins that can be used throughout the body. I have not had any issues with infections/cellulitis though have had many cuts, scrapes, and punctures in my activities but for some a small paper cut can cause BIG issues - not worth taking a chance. (All I use on them is hydrogen peroxide.)

Injections - an allergic reaction can happen anytime - even from previously gotten injection. Why take a chance when there is already lymphatic compromise in the LE arm.

There is no reason that a particular arm has to be used by some lazy RN or Phlebotamist who will not have to deal with any issue personally IF anything does happen. There are other options - use other arm or legs for BP, use other arm or legs for blood draws, use other arm or other parts of body for injections. Other than that 1 'stupid RN, no one has ever suggested using LE arm.

Does not make sense to me to take any chance of possibly causing more/potentially serious issues - when it's easy to not take a chance.

So my breast swelled up a few days after I got tattooed for radiation. They warn you about your arm, but they don't tell you about any issues with the trunk... they can't even measure the fluid in the trunk? So strange, like it only matters in the arm or something.

My LE specialist (tops in the Midwest) told me to avoid BPs & needles in my R arm “if possible" (he too has shitty veins that roll). But he also told me to avoid hot tubs, saunas & schvitzes. By measurements, observation & palpation, he says I probably don't have LE in that arm but from the descriptions I gave (had soreness in forearm when extended & rotated, fingers swelled when wearing compression--gauntlet rather than glove--on a very long flight, and arm felt stiff in the mts. of Sicily) he's diagnosing me with borderline Stage 0 so that Medicare can pay for my OT (4 sessions starting tomorrow). He also says my hard and huge breast seroma is just a seroma aggravated by rads, not LE. He would know.

Could also be that the finger swelling was from eating airline food, which is heavily salted in order to compensate for lowered tastebud sensitivity at cruising altitude (not to mention those danged peanuts). The arancini & pizza I ate up there in Taormina probably were fairly high in sodium.

I had snb and only a few taken from each side, very low risk of getting LE...but I am flying to/from Europe in May and am wondering if I should get sleeves. The bit Ive found online seems to say with such low risk it would not really be helpful and in fact could be harmful to wear sleeves during the longer flight segments. Any thoughts? and which dr would I start with for getting a referral? My regular dr or the onc?

ChiSandy, cancer does indeed suck. Question for you: did your LE therapist say anything about wrapping? I know that before this flare, your LE was very minor. I wrapped for a few weeks before being fitted for a sleeve, and it made an enormous difference. It's a nuisance, but it did the trick and got me to a point where things were stable. The LE therapist showed me how to do it myself so if I get a flare in future I can go back to wrapping until it stabilizes. I found that for me, the wrapping was much more effective than the MLD.

So sorry, ChiSandy! That really sucks!

h

Hey, let's educate ourselves: http://lymphaticnetwork.org

And

http://www.stepup-speak out.org.

I asked my LE PT about wrapping and night compression and she says I’m not there yet. My husband (cardiologist/gerontologist) has several patients who had mastectomies and developed LE. He says my pitting is trivial compared to theirs. But he also says their LE waned over the course of a year. Who knows?

As to aisle walking in-flight, good luck with that in coach and the crowd-control flight attendants there. After my first knee replacement in 2012, I was instructed by my surgeon & PT that on long flights, I should walk the aisles and do “wall-sits” periodically. I was in Premium Economy on British Airlines enroute to Budapest 6 weeks later, and the flight attendants there were trying to make me go back to my seat. Luckily, there was another passenger doing exactly what I did--she too was recovering from knee surgery. The flight attendant tried to direct me to the seated foot exercises set forth in the in-flight magazine. We both explained that we were at greater risk for DVT and PE than other passengers, and it would be on her head if that happened to us. She stopped trying to police us. (But mind you, we had paid a huge extra chunk of change for Premium Economy--an actual intermediate class as opposed to most airlines’ “Economy Comfort,” which only gives you legroom. I shudder to think what it’s going to be like in steerage--er, coach--especially when LE isn’t perceived as life-threatening the way DVT/PE is). The only flight attendants I know who understand LE prevention are two sisters, recently retired from American, one of whom is a bc survivor who got LE....and she’s petite and slim.

I haven't had any trouble so far. Rather than walk the aisles, I walk to the rest room at least every 2 hours. In the restroom, I do some arm exercises. I then go into the galley or other "open" area, explain if necessary that I am at higher than normal risk for blood clots, and thank them pre-emptively for allowing me a few minutes to stretch every couple of hours.

FINALLY!

The medical and lymphedema community answers back to the faulty conclusions of this study. In a post today at Joe Zuther's "Lymphedema Guru" website (he is the director of one of our major lymphedema therapist training schools) he is featuring an article by Dr. Judith Nudelman, MD., analyzing the study and offering corrections to the hype that has resulted. If your healthcare providers cite this study as debunking important risk-reduction practices, you might want to copy this out and share it with them, and challenge them to read the full study for themselves as well. Take a look!

http://www.lymphedemablog.com/2016/04/06/debunking...

YES! Be well, all,
Binney