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lymphedema

khsherwood's picture
khsherwood
Posts: 29
Joined: Jan 2011

Hi, has anyone else had problems with doctors who refuse to listen to your wishes about not doing IVs on the affected arm? I am scheduled to have a shoulder replacement surgery on my left shoulder two weeks from today. I had a mastectomy on my right side thirteen years ago. I have not developed lymphedema. I believe it is in part due to the fact that I have been following the precautions since the day after my mastectomy. I only had five lymph nodes removed because I had a sentinal node biopsy during the surgery. The PA who was doing the pre-op visit for my shoulder surgery just laughed at me when I told him that I couldn't have IVs in my right arm. He said my worries about lymphedema are ridiculous, " that it is so rare it's not even an issue anymore." I was shocked and upset with his attitude. he said "we are putting it in your right arm, end of story."
What would you do?
Kelly

disneyfan2008
Posts: 5504
Joined: Oct 2010

I always refuse-Many times I hear it's OK..I say NO right arm only. Last Friday I had to have biopsy of same breast I had BC in 4 1/2 yrs ago. Nurse went to do BP...I said "right" arm ...she said NO this arm. I said I had lymph nodes removed..she said well OK. (did right arm)

I have very bad tiny viens-yet even at all my blood tests I use just right arm. THEY will say (after I start out ONE arm and crappy viens) "let me see the other arm"

Denise

disneyfan2008
Posts: 5504
Joined: Oct 2010

My annual coloscopy and all other procedures hospitals put bright PINK wrist band say dont' use this arm

disneyfan2008
Posts: 5504
Joined: Oct 2010

My annual coloscopy and all other procedures hospitals put bright PINK wrist band say dont' use this arm

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

Though you have only had 5 lymph nodes removed and therefore POSSIBLY a reduction in risk over having them all removed, I would still insist. He is not the one taking the risk. You own your body not the medical profession. Perhaps you need to speak to his supervisor regarding his attitude. I think I smell grounds for a lawsuit if he uses the other arm against your wishes.

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

Stick to your guns about this. Go above to his supervisor. Lymphedema can happen at any time and you are still at risk. Sorry you have this to deal with. xoxoxo Lynn

cinnamonsmile
Posts: 1054
Joined: Dec 2010

I have lots of nasty swear words for that PA. He should be reprimanded. I would contact his boss immediately. LE IS NOT SO RARE THAT IT ISN'T AN ISSUE ANYMORE. He is poorly informed and I would never see him again. He is a poor excuse for a doctor.

I stand up to idiots like that. IT IS a problem. I would ask him for references on where he gets his information regarding LE and tell him that he is one of the ignorant professionals that put people at risk for a dangerous condition. I learned that is NOT just the swelling that is bad, it is WHAT IT DOES TO THE TISSUES AND ORGANS BENEATHE THE SKIN!!

I am so incredibly mad and if I could sit down with that guy I would let him have it. How dangerously irresponsible he is, and rude NOT to respect your wishes. He needs to be reported.

People who even get sentinel nodes removed can and do get LE. Demand that they NOT put IVs in that arm. Remember that THEY WORK FOR YOU. Your pay for your services. If you got rotten hair cuts repeatedly do you keep going back to the same person? Most of us wouldn't. So why do we go back to unprofessional, idiotic, rude medical professionals (unless there is ABSOLUTELY no other options) that deal with our health?

I have been saying lately that when I had the bilateral mastectomy and got rid of my breasts, I gained a lot of gumption and don't put up with crap from my medical professionals.

You are important. Your health is important. You have the right to complain and say NO. SAY NO TO IVS in the effected arm/s.

If you don't have the courage to speak up, take us with you. We will ride that pink bus and go right into the appointment with you (figuratively speaking, of course), but keep our voices in the back of your mind.

Rague
Posts: 3383
Joined: Aug 2009

Nodes do not have to be removed for LE to raise it's ugly head. Just the cutting in any surgery can damage the flow. I know someone who deals with LE in her lower leg from relative minor knee surgery - no nodes removed.

cinnamonsmile
Posts: 1054
Joined: Dec 2010

Dear KS,
I forgot to add a link to a wonderful Lymphedema website. Take a look at it yourself and suggest that that ill informed PA take a look into research on LE as well.

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

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

Cinnamon and I are thinking alike. :)

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

That's what I'd say to that doc.

He's wrong, ignorant, uninformed and an arrogant fool.

I would walk away.

I've had nurses slam the door when I say to BP in my arm. THEY don't have to live with the consequences, I do. No one is going to stand up for you on this issue but you. Don't give in.

Here are some tips on what you can do and what you can give to your doctor o support your position.

Don't give in! What you have experienced from that doctor is absolutely unacceptable!

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

Printer friendly version
http://www.stepup-speakout.org/WHAT%20WE%20NEED%20OUR%20DOCTORS%20AND%20NURSES%20TO%20DO%20AND%20KNOW%20ABOUT%20LYMPHEDEMA.pdf

Article written by a Physcian with LE that you could give your doc

http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

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

Here is a very recent article written by one of the founders of the step up speak out site.

It is one of the most beautifully written, touching, informative pieces I've ever read on Lymphedema.

http://www.literarymama.com/columns/archives/2012/10/my-fat-arms.html#comments

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

Kelly,

Here is a sleeve that doesn't provide compression that you could wear to alert medical personnel to your situation.

http://g-sleeve.com

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

Every where i've ever had a lab draw, blood pressure, even a finger poke, they ask me what arm they can use. I would drop this doc like a bad habit.

cinnamonsmile
Posts: 1054
Joined: Dec 2010

I soon as I read this and smiled...I was imagining a guy (just a figure in my mind) getting slapped up side the head, his reaction of what did I do to deserve this....Great comment...Although, let's keep in our dreams, lol.

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

I cut or even bump my left arm, lymphedema kicks in. I where a sleeve on plains, etc. Lymphedema is easy to get.

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

I cut or even bump my left arm, lymphedema kicks in. I where a sleeve on plains, etc. Lymphedema is easy to get.

khsherwood's picture
khsherwood
Posts: 29
Joined: Jan 2011

Thank you to everyone. I really appreciate your support. I printed out a few of the articles you recommended. I need to take some time to figure out what I am going to do but I don't have too much time. I have gathered all this information about Lymphedema and I think I will send it to this doctor to pass on to his staff. My husband agrees with some of you. He said that I should have gone to the PA's superior to start with. The problem is that he never seems to be available. He has his PA do all the pre-op and post -op visits. I guess he just shows up to operate.
In fact last February this PA said that if I would just wait all my pain would magically disappear a year after it started. A year has passed and the pain is as bad as ever. In fact he gave me an article to read on being "a patient patient". I know this has nothing to do with breast cancer but I can't help thinking that I have survived cancer twice (I have also had ovarian cancer) just to deal with this disease . All of my joints are deteriorating at an alarming rate and this is my second joint Replacement in the past year with many more in my future. Thanks to everyone again for your help, Kelly

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