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DO NOT use arm on side you had surgery on for BP etc

disneyfan2008
Posts: 5435
Joined: Oct 2010

I have always heard-DO NOT use that arm as surgery for BP, BLOOD work etc. I tell them each time I have surgery or my annual colonscopy-MY last two d & c the anesthesiologist
& finger surgery (2 diff anesthesiologists)each said NOT really necessary! Has anyone else been told that?

I still ONLY use the one arm-only big issue is I HAVE terrible viens-so makes it that much harder!

Just curious!

Denise W.

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

I haven't heard that ... I don't believe them.

I am shocked by the ignorance of so many on lymphedema.

I wasn't 'supposed' to get it.
If you have one node removed, you 'should' be fine.
Well, the more I read the more I discover it's not true. Germany and the UK are MUCH better and more knowledgeable about LE than here in the U.S. When I saw my LE therapist she showed me a picture of the lymphatic system ... the breasts themselves are pathways for the lymphatics. So, essentially if you remove both of them, you've taken out major highways of the system. If you close an interstate around a city there will be traffic jams. I think your docs are WRONG! My docs seem 'inconvenienced' when I tell them 'no' to blood draws and bp. Too bad! They don't have to live with the swelling, the pain. Our systems are compromised. Until I see substantial proof that THEY'RE wrong ... I'm not believing them.

I'm sorry about your veins, Denise. That just adds to the frustration. GRRRRRRR! I'm sorry! I wouldn't give in though when they want to use your cancer side. You're the one who might pay the price ... they won't.

disneyfan2008
Posts: 5435
Joined: Oct 2010

I keep left arm in coat sleeve to remember to not use...I TELL them only right arm and bad veins....after many attempts they will say lets check YOUR OTHER ARM...i say NO...

during surgeries and colonscopies since my breast surgery exacatly 3 yrs now...I have them put special bright color band on my left wrist and some have NOT on IV pole as well...

Thanks for reply...

Denise

sal314
Posts: 633
Joined: Jul 2010

I'm 9 1/2 years out from being first diagnosed. I still tell every nurse and doctor not to use my right arm for BP or needles. They always oblige and have never questioned it.

I still see my oncologist every 6 months and he still tells me to be careful. I still where a compression sleeve when I fly as well. I'd rather be safe than sorry!

Oh, and I too have crappy veins! Sometimes it takes 3 times to draw blood! I'm sure some nurses think I must have been a drug addict at one time! LOL.

Best,

Sally

disneyfan2008
Posts: 5435
Joined: Oct 2010

never heard of that...

Rague
Posts: 3337
Joined: Aug 2009

Yup - even without problems you should wear a sleeve when flying. Pressure changes.

mwallace1325's picture
mwallace1325
Posts: 806
Joined: Apr 2009

I have a bracelet on that arm in case I'm ever unable to tell anyone. Please don't let them use that arm. There is a reason we're told that.

marge

cindycflynn's picture
cindycflynn
Posts: 1133
Joined: Oct 2009

I've told everyone not to use my right arm since my surgery, and I only had 1 lymph node removed. I still ended up with lymphedema in the breast (so for the arm itself is OK).

Since lymphedema can be so difficult to deal with once it develops, I would definitely take care. I also started wearing a compression sleeve and glove when I fly just to be on the safe side. It's actually recommended to do that for anyone who had axillary lymph nodes removed. I told a friend about that (she'd been diagnosed about a month after I was so we went through treatment at the same time) and she said nobody had ever mentioned anything about that to her.

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Angie2U
Posts: 2993
Joined: Sep 2009

My oncologist and surgeon both told me to never have my blood pressure taken or blood drawn, or any type of injections, like a flu shot, from the arm where nodes were removed, and, to always be careful with my arm.

If you ever have surgery again, you should make sure they put a bracelet on that arm instructing everyone to not use that arm for anything. They have bright neon colored bracelets to alert medical staff for this and other things too.

Angie

disneyfan2008
Posts: 5435
Joined: Oct 2010

I was just curious if anyone else has been told ahh it's ok....to use

AT one surgery they couldn't get blood for test after many painful attmepts...I NOTICED ON my chart they wrote patient refused (preg test-mind you menopause some time back)! I never refused they just felt bad. MOST OF MY BLOOD work and IV must be in top of hand...

lovs2decorate
Posts: 44
Joined: Jun 2010

My breast surgen also said if you get your nails done DO NOT let them cut your cuticles off and that you should ONLY use your own impliments when you have your nails done.

She also said if I get any kind of cut on the arm / hand that the node biopsy was done on that I am to call to her so she can decide if I should start on any type of meds to fight off possible infection.

Recently it was brought to my attention that if I do any kind of weights that I should wear a compression sleeve as well.

Hope this info helps.

Justine :)

disneyfan2008
Posts: 5435
Joined: Oct 2010

I no longer get nails done....due to surgery on both hands last winter! (arthristus in knuckles)and more to follow (I am sure soon-I can see and feel)with the surgeries ruined my nail bed so they split-etc and knuckles painful when they hold to file etc..

but good to know..I HOPE someone on this board didnt' know and learned something-like I DID today..

thanks for info!!!!!

Denise W

mimivac's picture
mimivac
Posts: 2147
Joined: Dec 2008

The risk of lymphadema is no joke and once you have it, you can't go back. I had a lumpectomy and only 2 sentinal nodes removed, but I still do not use that arm for BP or blood draws. Assert your right to do this even if the risk is small. You have every right.

Mimi

disneyfan2008
Posts: 5435
Joined: Oct 2010

small risk....for sure...I was very slight risk of BC and got it...so NO one will talk me into it...(using left arm)

Lighthouse_7's picture
Lighthouse_7
Posts: 1566
Joined: Jan 2010

I will NOT let anyone use my surgery arm! Once in a while a nurse will say, "I never heard of that" to which I respond, "Well you have now".
I was told that once I got lymphadema that it never really goes away. I am so careful that I don't even pick up anything heavy with that arm.
Haven't flown yet, but when I do I will wear a sleeve.
Hugs,
Wanda

disneyfan2008
Posts: 5435
Joined: Oct 2010

I have never heard anything until today about flying and any issues! could someone explain...? I have flown more since BC surgery then in my life...curious what it is about!~

cindycflynn's picture
cindycflynn
Posts: 1133
Joined: Oct 2009

Here's the web address to an article from Lymphnet.org that discusses flying:

http://www.lymphnet.org/pdfDocs/nlnairtravel.pdf

Sorry, I don't know how to make it a link you can just click on.

disneyfan2008
Posts: 5435
Joined: Oct 2010

Thanks for info...i'll check it out

Double Whammy's picture
Double Whammy
Posts: 2320
Joined: Jun 2010

And I wouldn't have even known to ask if it hadn't been for this board. NO ONE (oncologist, surgeon, primary care physician) ever even mentioned not having BP or blood drawn or chemo on my bc side. After my bc surgery while in preop for my hysterectomy, I asked the folks (nurses, anesthesiologists)if since I had only 2 lymph nodes removed did I still need to avoid blood stuff/IVs in that arm. I got a mixed response! Anesthesiologist said there are mixed opinions and that it's probably ok, nurse (who had bc) said she won't have BP or blood draws on that side! So I asked my oncologist one day and she said it's just safer not to, that if I were in an accident or something and couldn't tell medics not to use that arm and they did, she wouldn't worry too much, but as long as I was communicative, I should avoid it. So I am.

When I got my flu and pneumonia shots this year, since they couldn't give both in the same arm, I got one of them in my butt as ordered by my pcp.

I won't take any unnecessary chances. It may be that there's not enough data on lymphedema for women who have had only sentinal nodes removed, but I don't want it regardless. To this day, no one has said a peep about flying, either. Guess I'll ask about that if I remember.

Suzanne

disneyfan2008
Posts: 5435
Joined: Oct 2010

I asked if I should wear medica alert braclet & I was told in and emergency that would be the least of my problems-they will use where ever they can get vein!

survivorbc09
Posts: 4378
Joined: Jun 2009

I never let anyone do anything with my arm. Unless they just want to look at it! LOL

Hugs, Jan

cindycflynn's picture
cindycflynn
Posts: 1133
Joined: Oct 2009

We have a clinic that comes to our offices every year to do flu shots for employees that want them.

So I lined up last year and began to fill out the short form we had to turn in before being given the shot. I noticed that one of the questions was "Have you ever had a mastectomy?". Since I had a lumpectomy I answered No, but I asked the technician when it came to be my turn if that question was there because of the lymphedema risk, and he said that it was. I pointed out to him that some women, like me, may have had lumpectomies or other procedures involving the axillary lymph nodes, and that they should think about re-wording that question.

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

My oncologist also told me no shots, blood pressure readings or anything done to my arm. It is written on all of my records, but, I always remind them too.

Hugs, Kylez

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MyTurnNow
Posts: 2694
Joined: Aug 2009

Denise, I was told the same thing....no blood draws, blood pressure, injections, etc. in left arm (cancer side). My surgeon told me that from the date of surgery forward, I needed to be very protective of that arm. No excessive lifting and if I cut that arm I was to immediately have it seen. I had 2 levels of lymph nodes removed at the time of the bilateral mastectomy. I do have pedicures but do NOT let them cut the cuticles. I have not traveled via airplane since surgery and am somewhat concerned about this. I'll cross that bridge when I come to it.

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

I don't have lymphedema MyTurn, and, I have flown with no problem. I am not for sure if that is rare or not, but, it hasn't bothered me. But, talk to your oncologist about it.

Hugs, Diane

sbmly53
Posts: 1481
Joined: Jan 2010

I not only tell them it's one arm only, but with my bad veins, I tell them how I want it done - pediatric needle, back of my hand. A few months ago, a lab tech did it his way and I had a softball sized bruise between inner elbow and wrist that lasted for weeks. I took a picture of it, wrote a letter to the hospital and stated that this tech would not listen to me.

I got a letter of apology, but I think I wounded either his male or professional pride. Too bad. I'm not letting that happen to me again. I ask for a hot pack or a ball to 'pump' and I am amazed at how many lab techs don't use them, don't want to use them or even have them on hand.

It's just one more thing you need to stand up for.

Sue

kt1127
Posts: 51
Joined: Jan 2011

I had two lymph nodes out and dr told me NEVER use the arm for needles. Sorry about your veins but I would not use it if you can

pokrydi's picture
pokrydi
Posts: 99
Joined: Feb 2011

I just had 21 lymph nods taken out 1/14/11 and can't remember where but a nurse told me not to use that arm for blood pressure or anything am I ever going to get strong enough to play golf again?????

cabbott
Posts: 1046
Joined: Aug 2006

One friend told me she had to have blood pressure taken in her leg because of breast surgery on both sides. I bet blood can be taken from other veins too. Babies get blood drawn from the soles of their feet. I wonder if they can get blood from the veins in my ankles? The veins there certainly seem prominent enough! Maybe it would make them shrink!!!

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Yes, if they can't take your blood pressure from either arm, they use your leg. You should never let anyone use your arm where your nodes were taken out for anything. You can buy bracelets or a medical alert bracelet stating such if you want.

Hugs, Megan

disneyfan2008
Posts: 5435
Joined: Oct 2010

if alert just tell care takers and if emergecny they will just do what they need to do..!

cinnamonsmile
Posts: 1049
Joined: Dec 2010

so what do you do when you had a double mastectomy with bilateral SNB?

VickiSam's picture
VickiSam
Posts: 8320
Joined: Aug 2009

I have my blood pressure taken at my ankles. Werid thing is ... many health care professionals have a difficult time getting my pressure on my ankles, and it takes several tries. Also, please note that blood pressure is slight higher at the ankles, just a medical fact -- most Doctors are aware of.

Please have your pre op nurse mark your arms with colored tape .. before surgery, noting that blood pressure must be taken on ankles. Worked for me ..

It's our health, our body .. so we need to be vigilant about what goes in, and on our bodies .. now... Blood pressure cuff, is torture! Yikes

Strength and Courage,

Vicki Sam

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Always say NO! You really need to protect your arm and be very careful with it. I thought all oncologist's and surgeon's would tell their patients this.

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

Dear cinnamonsmile -

I had a DMX with bilateral SNB and I have lymphedema in the fingers of my cancer side. My BS doesn't believe me, my PS said "it is minor, don't worry about it." So little is known ... the conventional wisdom in the U.S. is that if you just get the sentinels removed, you're not at risk. Not true!

I've found the following website incredibly helpful. The U.S. lags behind Europe in its knowledge of and treatment for lymphedema. I just say no for bp and blood draws. It frustrates some docs/nurses, but I'm not giving in. I have to live with the consequences, they dont!

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

disneyfan2008
Posts: 5435
Joined: Oct 2010

I have never heard it mentioned....curious of replies

helen e's picture
helen e
Posts: 223
Joined: Sep 2009

I was told by everyone who worked on me about no blood pressure or shots in that arm. The one who told me about flying and exercising and using a compression sleeve was my physical therapist. I still didn't believe her because I didn't have one while I was seeing her (it was on order) and had no problems. Then one day last summer I was stacking wood for the winter and thought nothing of it until the next morning when I hurt like crazy and couldn't figure out why. I went to work and had to come back home when I figured out what it was. I put on my compression sleeve and after a while my arm started to feel better. I have not moved another piece of wood since.

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

I have been also told to not have blood pressure, shots or blood drawn. I have flown with no problems, as, I don't have lymphedema. Well, not yet anyway. I thought I read on here once where you can get lymphedema even later? Does anyone know if that is true?

Dot53
Posts: 237
Joined: Nov 2009

It is a lot harder for those of us with bi-lateral mastectomy.. I have refused multiple times and have been told that I can have the bp and blood draws out of my arms... most times when I say no to the blood pressure cuff on the arm they say forget it then and won't do it on my legs. It is a real problem b/c all doctors have different opinions on this issue and they look at me like I'm nuts..

Love,
Dot

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

Dot, I know the look you're talking about. The sigh, the roll of the eyes. It doesn't bother me anymore. We have to stand up for ourselves. No one else is going to. I'd rather be too cautious on the LE issue that not cautious enough. LE is a true pain, and once you have it, it never goes away. JUST SAY NO! :)

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

Noel, you can lymphedema 5, 10, 20, 30 (If we live that long!) after. The risk never goes down. That's why we have to be our own advocates. No one is going to pay the price for the BP, the needle sticks but us. We have to stand up for ourselves and be careful.

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