Should I get a sleeve made? .

Jayaytea

I had UMX of left breast with immediate reconstruction 11 months ago.  The Sentinal node was removed with no trace of involvement.  Good margins, no rad, no chemo.  I had a complication 5 days after MX due to hemotoma and required surgery. (They had to remove and replace the expander to find the bleed). I'm  on Arimidex and have Had theTE exchanged for my permanent implant, plus one follow up revision for fat grafting.  So far that makes 4 surgeries.  I have at least one more pending.

At the time of my MX both the general surgeon and the PS told me I was at very low risk for LE and wouldn't require a sleeve.  They were aware that we had a trip to Mexico and flew 10 days after my second surgery (15 days after my mastectomy).  We have flown 4 times since my MX and that is probably a good predictor for each year.

Has any one ended up with LE with only one node removed?

BayouBabe

I have LE and only had one node removed.  Please take precautions.  Better to be careful now, than fight a lifetime of LE.  I would get a sleeve for future flights.  Also, be sure not to get IVs, needles, or BP in arm on side where you had node removed.  LE stinks.  Too many doctors unfortunately keep their heads in the sand and think it can't and won't happen to their patients.

Binney4

I had one node removed on my mastectomy side, none on my prophylactic side and have bilateral lymphedema. Do take precautions, even if the medical folks roll their eyes at you! You might want to get a referral to a well-qualified LE therapist for baseline arm measurements and some personalized risk-reduction suggestions. Here's how to find one near you:

http://www.stepup-speakout.org/Finding_a_Qualified…

S/he can also help you get the right fit in LE garments, as a poorly fitting garment can cause problems too. If you get a sleeve BE SURE to get hand protection too, either a glove or a gauntlet (fingerless glove). Here's why:

http://www.lymphedivas.com/handprotection.asp

Be well, and may you never join our Sorority of Swell!
Binney

Jayaytea

thanks ladies!  One activity I've always practised is yoga.  My instructor is aware of my surgery and has not precautioned me against doing any poses. She is also a registered massage therapist, so I've always trusted her.  Do you know if I should avoid any positions?

carol57

jayaytea, yoga can be quite helpful to keep the lymph flowing, and there are even some studies to show that. Deep yoga-type breathing is an essential element of LE treatment, so it's not surprising that yoga can be beneficial.  Having said that, you are right in your sense that some positions might best be avoided or modified.  Here's another resource from stepup-speakout, a document you can give to your yoga instructor. There's a section about yoga, and I hope she will read the full document, because the background about lymphedema and research related to LE and exercise will help her put the yoga section in perspective.  Here's the link: http://stepup-speakout.org/Trainer%20doc%20for%20...

Kicks

An appt with a Certified LymphEdema Therapist (not some PT that claims they know "all about LE)") would be a good idea.. You can get info on MLD and have a recorded baseline just in case  needed in the future.  Prevention is much better than to fight it .  

Were you told no BPs, blood draws/IVs or vaccines in that arm?  If you weren't told - DON`T.  These can be `triggers`!   I've been fortunate in that I've only run into one RN (happened to be a male) in 4 yrs who tried to argue with me about doing a BP on my LE arm because he had 'office set up to use right arm `- I `won` when I got up and was walking out his door to go to thre main station.  I already deal with LE but if I didn't - I'd be just as, or more, careful IF I didn't.  I've had 4 surgeries since LE and for 3 of them even though I wasn't totally knocked out my LE arm was well marked - NO BP/NO IV,  Actually those 3 I was allowed to wear my sleeve and gloove into surgery - 2 were for cataracts and the other for a detached retina.  The one I couldn't wear my grments and  was totally knocked out for surgery on my LE arm (I slipped on a dog bone in the hall - Gotta lovde your dogs  LOL) and did a 'really good job on it'.)  I was VERY well marked up saying "NO BP/NO IV" on the arm.

Do you need to have a sleeve and glove MADE?  Highly unlikely as there are many sizes that are OTS (Off The Shelf) that fit the vast majority.  Custom are more expensive.  Mine have to be Custom as there are no OTS that come close to fitting me.  My hand is somewhat webbed which OTS does not allow for at all,  so has to Custom for me.  They do  not make OTS in the measurements and compression leve,l I need so sleeves also have to be Custom.  (My CLET guy is great and he happens to be with VA.)

LE does not only effect women after node removal after BC surgery.  LE can happen after any surgery, even when nodes are not removed.  I have a friend who had minor/non-invasive knee surgery - she fights LE more/worse in her leg than I do in my arm and I had 19 pos. nodes removed..

Don't be afraid of living - but you have to be your own best advocate and stand your ground!   Do not 'buy into' "you don't have LE so it doesn't matter".   "They" are not the ones who will have to deal with LE IF it is triggered - you are.

Jayaytea

Carol57 and Kicks,

Thank you very much for your responses.  Your took the time to give me very sensible information.  I WAS indeed warned not to have injections, etc. to that arm. During my last surgery 4 weeks ago, the anesthetist had to be convinced to use my opposite arm!  She actually said that "they" have been informed that no longer is necessary!  I held my ground, and she switched for my peace of mind.  I will pass along that link to my yoga teacher.  Thanks again.  This site is so helpful!