Something Peculiar:

I had a spot that I thought was a new mole...nope, it was chocolate..hehe
I have chocolate running through my veins

That is odd. My guess is you did just get a usual bruise and that that particular spot is more likely to be sensitive and more of a focus for bruising/blood coagulating. Remember that the issue with adria isn't the vein itself, it's the damage that it can do to the surrounding tissue. Sounds like there was a little damage at the time and it's showing up now because you have a particular insult to that area. hmmm.

BTW - and I know that I'll get some good responses to this if any of the experts on the board happen to see this. When I had my last surgery I had a wonderful anesthesiology attending with my nurse anesthetist. He talked about there being a lot of research showing that both IVs and blood pressures are ok in affected arms for women who have had axillary dissections. He said that women are so worried about it that they don't tend to do it but that it's fine to do. I haven't had the chance to follow up on the research on that but I'm curious if anyone else has any experience with it.

J

I liked the chocolate answer best myself

As for having a needle or anything done to the arm that had the dissection, I've had my blood pressure taken there, I've had blood drawn and so far, so good. I don't have it done on a regular basis so I think that helps. I've been told by my doctors that these things are fine...I was a little nervous at first, but as I said, so far, so good....

I have lymphedema and there is no way on God's green earth I would let anyone use that arm. I had a B/P by my forgetfulness or chemo brain once and it hurt. I could not figure out why until I thought about it. B/P's never hurt in the contralateral arm. I do let them use my other arm even though I had a bilateral mastectomy. The one was prophalactic. Lymphedema is lifelong and the treatment is very time consuming. I would not sign up for it if I had an inkling that protecting it from very little might prevent it. Please find those publications on that research. I think there are a few women here that may like to see them.

I had 7 nodes removed and also had radiation and have lymphedema in my arm and mainly my hand. Mine, so far, is a fairly mild case although I haven't seen my knuckles on that hand in over a year. I'm not familiar with the research your dr. is referring to....maybe he's right but it's easy to say it's fine, don't worry when you're not the one who's going to have to live with it the rest of your life. Sometimes, you probably can't avoid using your affected arm but I can't see taking the risk if you don't need to.

Pat

Hi, Joan and all! You knew I'd be along, right?

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The anesthesiologist is probably right--IVs and BPs are so in his realm, he'd know.And there's lots of trouble to him if he says this lightly.

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True, IVs and BPs are in his realm. Lymphedema (LE), though, is not. Here's why: The treatment of LE does not involve either surgery or drugs, so it is not treated by our doctors. As a result, it is not taught in our medical schools or in our nurses' training programs. Typically, the entire lymph system is taught in our medical schools in a single day. So it's not entirely their fault that they don't know anything about it and therefore consider it unimportant. But when us bc veterans develop LE, it is not our doctors who have to deal with the pain, disfigurement, disability, compression garments, and time-consuming chronic treatment -- it's just us. As for the "trouble" he'll get into if his ignorance ends up causing someone LE? Not! So little is known about LE that women disabled by it can rarely qualify for SSDI, much less sue someone for malpractice. What your LE sisters here on the boards report as the most common response of their healthcare providers (surgeons, oncs, PCPs, nurses, etc.) to their LE diagnosis is: "But aren't you just so glad to be alive?" A close second is: "Learn to live with it."

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My onc didnt hesitate to order the IV in my "bad arm" and when I whined, he growled at me "it will be fine."
It was.

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One thing we do know about LE is that the effect of stresses to the lymph system (like flying in planes, straining the arm, IVs and BPs and injections, exposure to heat, etc.) are cumulative. That is why women four or five or twenty years out from treatment "suddenly" develop LE from something they've done all along with no problems. The risk is for the rest of our long and otherwise healthy lives.

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I've a friend who had extensive shoulder surgery.Consequently, she never had sticks or IVs, or BPs in that arm.She developed a whomping case of LE and had to get all new blouses and rings.
Her PT was amazed, saying "Only women who have had nodes removed get this!"
Right.

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As you imply, Joan: Wrong! Football players get LE from the trauma to their chests. So do victims of auto accidents and women who have breast reductions or enhancements, and patients who undergo heart or lung surgery. However, recent research does indicate that more nodes removed is a predictor for LE. So is obesity, and especially weight gained following surgery. So is diabetes. So is axillary and supraclavicular rads. But those only up the risk, they don't create it. We're ALL at risk.

And by the way, like all of us, your friend with LE can choose to undergo intensive therapy to bring down the swelling, and intensive self-care to keep it that way, thereby avoiding not only the need to give up her rings and her clothing style choices, but reducing her risk of serious systemic infection as well. As with any other phase of cancer treatment, with LE we each have to choose the options we're willing to live with.

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I think it's another toss of the dice.
Not that I'm cavellier about letting my arm be used.
But once my PCP & I were deep in conversation.She took my BP.It wasnt until later that I realised she had taken the "wrong" arm, and I , so busy ranting, had given it to her.

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It's not really a dice toss, but it seems that way because all the causative factors are still not known. Fortunately, due to years of awareness efforts, research is now on-going. Most promising areas: the role of genetic makeup in determining the strength and resilience of an individual's lymph system; the relative health of the lymph system before the trauma of surgery or rads; and the possibility that LE is an inflammatory response. All of these offer hope that in the future predictions can be made about who will and will not develop LE, allowing those at special risk to take extra precautions. Until then, we each have to choose how much we're willing to do to prevent it. The National Lymphedema Network has a Risk Reduction Position Paper available at www.lymphnet.org that lists steps you can take to limit your own risk if you choose to.

So why'd that anesthesiologist say what he did? Not because there's research showing BP and IVs have no affect, but because there's no research showing that they do. Which is not to say there's no EVIDENCE that they do. There's plenty of evidence of that, but to date it's largely annecdotal. He (and we) can choose to ignore the evidence we have (especially the anesthesiologist, since heeding it is likely to be considerably more inconvenient for him), or we can be proactive in protecting ourselves from a future of disfigurement and distress.

So far, by teaching in-service classes about LE to oncology nurses at local hospitals and nursing programs, I've found the nurses to be open to learning, deeply regretful that they are coming so late to this knowledge, and eager to protect us BC veterans from this condition, even when we ourselves are "cavalier" about our risk! But I've also found that talking and writing to BC sisters themselves is pretty much futile. And I even understand that: before I had LE I for sure didn't want to hear about it. Enough already! So I know what you're thinking (sigh!), and if you've even read this far, THANK YOU so much! I am so sorry that we're all facing this, and I'd give anything to prevent even one of us from having to deal with this diagnosis. The right to choose our own compromise with risk is sacred, but I hope at least the choices we make can be made from wisdom, and not in ignorance.

Be well, all!
Binney

I must echo Binney. As a nurse practitioner, I can tell you I was IGNORANT about lymphedema and treated it incorrectly when I encountered it... diuretics and pumps... never heard of manual lymph drainage!!! By the grace of God, when I developed LE 3 months after surgery, my surgeon recognized it immediately and sent me to a certified LE therapist. Now, I had been practicing in this town for years and had never heard of a lymphedema clinic or lymphatic massage. I was STUPID!!! I must say the physicians in this town were just as ignorant as I was... except my gem of a surgeon... who sadly is now retired.

Do not ever let anyone take a BP or draw blood from an affected arm. It doesn't take but ONE incident to provoke the darn stuff and I have in in my left arm/hand and trunk. I pick up a lot of LE in the clinic and 90% of it is not in those with a cancer history. How about those who... have had a sunburn, breast augmentation, pacemaker, stroke, infection, trauma, fractured limb, hysterectomy, prostatectomy or overweight. I have referred patients for LE treatment with all the above. Please do not listen to uninformed experts... there are plenty of them. Stick to your guns. I have been trying to lecture about LE to nurses in the area and they look as dumbfounded as I was when they hear about LE, the cause and treatment.

We have enough wrapped wonders, lymphomanics, sleeve sisters or whatever cutesy phrase you want to use. We all deal with misinformed healthcare professionals and darn it... it is pretty frustrating to fight for safe care and doubly irritating to me because I have a bachelors, masters and post masters and never heard of the darn stuff... Makes me mad! But I am Polish and from Missouri so I am not going to give up educating my fellow providers about this condition. Listen to Binney, she is right on target!!!

Thanks, Binney!

Pat

Sorry,
just taking the chance of droping some words to Binney.
Binney, the work you been doing in here been long,
as to LE risk and info and such,
though sometimes it doesn't show on the responses
the threads may have, your work and consern
about informing people through here, been outstanding.
Talking for myself and reading you back long back,
since all this started,
was that involvement you had and have,
that made it far easier for me,
I do not have LE,
but am at high risk for some "obvious reasons"
and because of my work, and my work is
not something one can give up from day to night;
If not for the all info you provided along the time
and I would be still looping around on what to do
to manage some couple of very important things
that did made the difference for me.
So, thank you for that!!

Hugs.

Okay, Binney, you've slapped me back to reality. LOL

I had neoadjuvant chemo. Even before my surgery because my onc knew there was node invovlement he said DO NOT LET ANYONE TAKE YOUR BP OR BLOOD FROM THAT ARM. I have never once ran across anyone who gave me a hard time for NOT letting them use the "bad" arm. I did forget one time when my pcp took my BP. I almost forgot last time until he started pumping the BP cuff.

My rad onc said I would be at risk for LE because of rads. So, I've been rather fortunate to have people around me who seem to know the risks. I do have mild LE.

Thank you for "slapping" me. I promise I won't let them use my affected arm.
Shirley