Presenting the NEW Breastcancer.org Lymphedema section!

Breastcancer.org has been a place of great support since I began my breast cancer journey in 2006.  Thank you for the information you give here about lymphodema.  At the present time, I'm feeling very angry about something that happened to me--not only for myself, but for other survivors who might come across a situation like this.  I had surgery yesterday for a torn meniscus in my knee.  My mastectomy with lymph node dissection was my right side, and I had told the surgery center that in advance. (I also had radiation,chemo) I had a no stick or blood pressure bracelet on. The nurse could not get the IV started after 2 sticks, so she referred to the anesthesiologist.  He was very nice at first, then he became increasingly frustrated in not finding a vein right away.  He looked at my right hand which has a very pronounced vein, and says "Why can't I use that?"  I told him I was a breast cancer survivor.  He then proceded to say "What type of surgery did you have....partial or full ......   After I told him I had complete mastectomy, and the 'full monty' so to speak, he said  "If you've never had a lymphoma problem, all that is an old wives' tale."

I was in shock, but I am an assertive person and said right away, "No, it isn't."   I then proceeded to tell him he was welcome to call my oncologist's office or breast surgeon.  In your article today, you said that we survivors need to be our own advocate, but I think it's terrible that we have to protect ourselves against physicians in the medical community.  I might also comment that I am a retired music teacher and being able to continue to play piano is very important to me.  Lymphodema would really affect this, so I've been fastidious to not take risks.  As I reflect on this, I get very angry and I intend to give comments to the administration at the surgery center as well as to my orthopedic surgeon.  Any other comments or advice from anyone?

oreolau, that is a sad and shocking story, and unfortunately, it's neither the first nor the last event of that ilk to happen to breast cancer survivors.  I hope that you do indeed follow up with comments.  If you've not discovered stepup-speakout.org, here's a link to a document that you can use as ammunition, written by a physician who developed LE after her breast cancer treatment: 

http://stepup-speakout.org/essential%20informat%20...

The author walks the reader through LE with emphasis on taking our risks seriously, and it's a very powerful document.

I woke up from my bmx, which included sentinel node biopsy on one side (5 nodes removed) with an IV and BP cuff on my SNB arm, despite having a perfectly good unaffected arm. I had to argue my way to changing that and to having arm precautions posted. Unbelievably, I was in a major-city, medical school-affiliated hospital.  I'll never know if the trigger for my LE was that inaugural insult to my just-compromised lymphatic system, but I'll sure always wonder, because my risk with just a few nodes out should have been very small.

That anesthesiologist showed a callous and willfully uneducated disregard for your safety. He should be disciplined in some fashion, although the cynic in me doubts that will happen. Even so, you strike a blow for all of us when you report his unethical behavior, so I do hope you will let your anger propel you to action.  Thanks for posting your experience and I hope you'll follow up with a description of any response you receive from your official complaint.

Best wishes for a speedy and uneventful recovery from your knee surgery, and congratulations for standing up for yourself!

Carol 

HI Oreo

What a lousy situation but honestly I work in surgery and am not surprised. Some anesthesia providers have an "interesting" bedside manner>>read dryer lint personality. 

 Its not just this situation-You should see how skeptical they can be when someone says they have a latex allergy or are allergic to Penicillin- honestly do they think people make this sh#$ up to torment them? Obviously no.

So you ask for suggestions- I can't help myself. 

Here is how I would frame it- you are in having an elective surgical procedure and your health history is complicated given you have contraindications to venipuncture and/or blood pressure. You tried to provide a complete and thorough health history and were treated in a condescending and questioning manner by your anesthesia provider. You do not expect an anesthesiologist to contradict instructions from your oncologist and breast surgeon knowing that is not their area of expertise.  

You may hate me for suggesting this but I would absolutely ask for documentation on the anesthesia and recovery room records of where your blood pressure cuff was placed to make sure it was not on your breast cancer side. 

Here is the kicker- tell them you would have a hard time recommending their center to others or having another surgery there after this experience (they reallly hate that). 

This is what you should expect. - If I was the administrator I would call you myself, tell you that is NOT the experience we want you to have at our center and that you will provide all this important feedback to the anesthesia provider so he is aware of your perceptions of his treatment.  I would then confirm to you that your breast cancer precautions were maintained throughout your surgical experience.  If that is not the case that conversation would be much more serious.

oreolau sad but I too can tell you some stories. My onc had my liver scanned for 2 years just to be sure (some suspicious stuff but ended up to be just cysts). 1st time I had to fight to get the IV in my foot. I have 10 nodes in the left and LE and 4 nodes in the right no LE. She could tell I was going to leave so she finally agreed.

Next time I had a different guy. We were very friendly both being from New England. He says to me "I see last time you got your IV in your foot.Well this time we are going to do it in  your arm." I said "no, if you don't do it in my foot I'm leaving and I'm not kidding." Ended up he never did it in the foot so that's why. He got someone else to do it. The next time he did do it in my foot. He had  learned how (granted I was his first).

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This summer I needed a blood draw. I no longer have my port because I finally had it removed November 2012. No place will draw blood from your foot. So I allow it my right arm with no tourniquet. But the woman there said she is not allowed to do it that way. I told her if I get LE in that arm I'm going to blame her company. She said "no blame your doctor she order the blood draw." I said but you're the one who refused to do it without the tourniquet. She finally called her supervisor who said it was OK. (I have really good veins). Ends up it was the most painless blood draw I ever had.

Yeah you have to fight. I fight all the time with BP too.

Oreo, I'm really sorry about your experience--as if elective surgery isn't stressful enough without having to fight for your own safety! Those of us with LE or at risk for it are never in more danger for exacerbation than when we're dealing with the medical community. I've found that even manicurists are more likely to understand the prohibitions after breast cancer than most doctors are.

Iago, I've found that if you call and ask about using your foot for a draw, they'll always tell you they can't do a foot draw, but if you show up with the order and stand your ground they eventually cave. You do have to have your doctor write "Draw from foot only" on the blood test order or they actually aren't allowed to do it. My PCP also got exasperated with all the challenges I get about my arms, so she wrote out a prescription form I carry with me stating that no bloodwork or BP can be done on either arm, citing both LE and infection risk. That's effective as well.

It rots that we have to educate our health professionals, but it's a whole lot better than letting them continue in their ignorance. Whenever I'm scheduled for procedures that are going to involve people attacking my arms, I stock up on LE educational materials (Jobst has some brochures for health professionals that they'll send you at no cost if you ask them, and I use the StepUp-SpeakOut material as well). I hand them out liberally to everyone who comes near me, and I say something like, "Here's some really interesting recent updates on LE. I know you'll find it helpful--I sure did!" That way I'm not sounding defensive and they can respond with interest instead of rolling their eyes and playing the "I'm-the-professional-and-you're-the-clueless-patient" card. That way, when I tell them NO about using my arms they figure I know what I'm talking about.

Thank you from all of us, Oreo, and from all the bc veterans who will come after you--even those with no clue they're at risk for LE. Hang tough--and may you never join our Sorority of Swell!
Binney

I only had one node removed.  It was radiating all the ones he left that got me.