Lymphedema phobia???

JM · Guest

Hi everyone. I'm starting to panic over my upcoming port insertion on Wednesday. The surgeon said they will place an IV in my hand in order to knock me out for the surgery. I had bilateral mast. Oct 20th, had 23 lymph nodes removed from left arm, and 16 nodes removed from my right arm. I am right handed. I told the surgeon I was concerned about hand IV and possible lymphedema. He said he doesn't do feet sticks and couldn't do jugular IV because that is the area he will be inserting the port into. My arms still hurt 3.5 weeks post surgery and I really want to avoid lymphedema if at all possible. I've spoken to two nurses who both say it isn't a thing to worry about since the IV won't be in for very long, but I'm still concerned. Still, I'm concerned about the pressure from the band used and also the actual IV stick itself. Am I worrying myself crazy for no real reason? I just don't want to deal with the arm pains I currently have, the hard time I have finding a comfortable sleep position, the side effects of chemo and then lymphedema all at the same time.
Thanks for your comments.

claisy · Posted: Mon Nov 15, 2004 3:37 pm Post subject: lymphedema phobia

Hi JM....I don't blame you for being concerned about this. I have had only one breast removed, my left one, 4 years ago. I had 15 nodes taken, all negative. My heart goes out to you. I have often thought what would I do if I got cancer in my right breast and nodes were removed. This is a terrible position to be put in. So far, I have not had any swelling.

I don't have many comforting words for you. I think I would ask every question I could think of to the surgeon about where to put that IV. Seems like I have read somewhere that they can put it in other places, especially since you have had nodes removed from both sides.

I also had a port...and I am so glad I did. I would recommend it to anyone having chemo. But your case is special. I can't comment on what the nurses told you. I know they know more than I do. Having said that, I also know the medical establishment does not take lymphedema questions as seriously as I think it should. Maybe Leo can help more if he reads your post in time.

Good Luck to you...you will be in my thoughts and prayers

leo · Contributor Joined: 23 Sep 2004 Posts: 1575

Hello

If you do not have lymphedema now, a peripheral IV just for anesthesia will not be a big issue. They will take the usual precautions, so you'll probably do just fine.

regards,
Leo
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Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

Bree · Guest

Hi JM,

I am 8 1/2 years NED on one side and 4 years NED on the other. I NEVER let anyone use my arms for anything. If your surgeon doesn't do foot sticks, then ask him to have someone else do it. Lymphedema can appear any time, days, weeks and even years after node removal. There is a website you can get free bright pink LE (lymphedema) bracelets to wear on each arm every time you need lab tests or have a procedure. I'll post the address if I can find it, MNLady might have it if she sees this thread.

LE is no fun and I don't blame you for being paranoid. Yes, it is a huge pain in the patootie to get your BP done on your leg and all bloodwork, etc from foot samples and frankly people just don't like to do it. They, however, are not the ones who may end up wearing a compression sleeve, using a pneumatic pump to get the darn thing on. I'm personally not willing to take the chance so I stick to my guns.

On the topic of foot sticks.... I have two tips - 1 - have them use a 'baby' iv, it takes a little longer to get a sample but is a lot less painful; I usually call ahead to the lab to make sure they have some. 2 - There is an over-the-counter cream you can get that numbs the skin. It helps.

BTW, I do have LE myself, just not in my arms. As soon as I could get my arms up over my head, I'd elevate them numerous times a day, for a few minutes at a time.

Good luck with your port surgery. Sorry you had to join the club none of us wants to belong to.

Cheers,
Bree

claisy · Posted: Tue Nov 16, 2004 11:24 am Post subject: Re: Lymphedema phobia???

Hi Bree...that address for the pink bracelets is

www.lymphedema.com

I posted it the other day under "lymphedema awareness"

I agree with everything you said. Fortunately, I haven't had any swelling in my arm, but I think about it all the time. I get so upset when I read about women who do have it. Why drs don't seem to inform us about it....I WILL NEVER UNDERSTAND THAT.

Dr. Leo, my question to you is..."are you going to be vigilent about informing your patients of this potential problem?"

My oncologist never mentioned it to me.

CeeCee · Guest

I am in a small city in Ontario, and am having a mastectomy on Friday the 19th, with some node removal. (sentinal biopsy is not an option here )and would have to do it in Toronto or Hamilton, which would mean waiting, and seeing as how my cancer is aggressive,and invasive, the sooner I have the mast, the better.
The surgeon said the only thing he didn't want me to do post -op, was to put my arm up high, over my head., but recommended circular movement exercise, at body level.
Is this what any ladies did post=op?
How much exercise, how often, and when? Thanks in advance.
Needless to say, I am nervous about the Operation, my smoking and high blood pressure, plus allergies to pain killers!
CeeCee

Guest · Posted: Tue Nov 16, 2004 1:04 pm Post subject: Re: Lymphedema phobia???

I can't help but post on this question.

Dr. Leo, with all due respect you have given information that is incorrect, or at the very least ambiguous and at the very worst, you have trivialized the issue of lymphedema. There are enough doctors, nurses, lab techs, and anthesiologists out here already giving the wrong advice on this subject.

Lymphedema is a real concern. It is not a phobia. It is a lifetime risk which can happen at anytime in one's lifetime if the lymphatic system has been disturbed. Physical Therapists trained in treating and preventing this horrible incurable condition would be cringing at your comment.

Shame on the medical profession for expecting us to be so self-informed and responsible for our own "health prevention" measures when we don't even get the truth from the very professionals we naturally turn to for advice.

A little more homework on your part is needed in this area if you are going to give such ambiguous comments.

Just who is this forum helping? As for Doctors saying they don't "Do" foot or ankle sticks... BS! Call in a surgical nurse if you need to... they know how to do them!

Ladies, do not let the uninformed medical professionals tell you that it is ok to get I.V.'s, blood drawn, or any needle in the affected arm. Or that it's only important to be vigilent for a year, or just a little while or any other such nonsense.

It is your life and the quality of that life after BC is your responsibility. Lymphedema and the possibility of it occuring is a real concern.

Shame--shame--shame! Have you ever seen a BC survivor with Lymphedema? Once it gets to a certain stage it never, never goes away. It is ugly, it is painful and it is something that can be prevented.

Seek out a Certified Physical Therapist who will be much more informed and will give better information than what was offered here.

Repectfully,
Cat

Rhythmkitten · Guest

Yep, me again. I realized I forgot to put my username on the above reply. Ladies, go to the website National Lymphedema Network (just type into a Google search.

There is a lot of information for free on the site as well as a subscription for about $20 a year for a newsletter to keep you updated.

Cat

Binney · Guest

Ah, JM, what a bad spot we find ourselves in! I must agree with the other women who have posted here. If the surgeon can't do it in your foot, ask him to make arrangements with someone who can. Ask nicely, say please--but don't take no for an answer.

I've had two mastectomies, have LE in chest and one arm and hand. My second surgeon scoffed at the idea of not using an affected arm. Old-fashioned thinking, he said. No evidence that blood pressure or IVs can cause LE. Just so you know, though, the "no evidence" only means no research has been done, not that research shows it does no harm. And until we have that research evidence, we all need to go by the best (and only) evidence we have, which is from patients and LE therapists. Because LE can appear at any point for the rest of our lives, it stands to reason surgeons and even oncologists don't have much handle on how many of their patients eventually must face it.

Dr. Leo, please do look into this further. Talk to a variety of LE therapists. In fact, invite a couple of them to address a group of oncologists and surgeons at your hospital. I'm aware that the training in LE is lacking in medical schools, and that research has been spotty at best. But those of us at risk deserve the best prevention efforts possible, because this condition is life-long, is intensive to manage and control, and certainly saps a whale of a lot of quality from lives already compromised by cancer. What those of us who've posted here would like best of all would be if you, Dr. Leo, would become an advocate among professionals for taking LE seriously. In fact, if you'd like, I can introduce you to any number of women with LE who will tell you in clear terms that the struggle with LE is in many ways more devastating to them than the original cancer. This is the absolute truth, with no paranoia involved.

I'm fairly new to LE (since May), so maybe my tears are understandable, but I've met women who've been treating their LE for 15 years who are still suffering bouts of deep unhappiness at regular intervals. There is no cure, it never gets easy, and this is no small thing.

Thanks, Dr. Leo, for creating this board, and thanks especially for your desire to hear us and learn from our experiences. In this matter of LE, we all look forward to a time when all those women who still face it will have access to the best care possible.

Thanks,
Binney

Binney · Guest

Oops! forgot to mention these:

National Lymphedema Network
www.lymphnet.org

Lymph Notes lymphedema education
www.lymphnotes.com

All best!
Binney

Binney · Guest

Oh, and one more thought, JM. I've never had much luck with the pink bracelet thingy. They just ignore it. What I've done that's worked for me is to write on both arms with a black permanent marker--it comes off later with alcohol. I write "NO" in big letters on the top of my arm, the inside of the elbow and the back of the hand. Then in smaller letters I write "bp" on the top of my arm, "IV" on the back of my hand and elbow. They laugh, but so far it's stopped them. But I had another thought recently that I plan to use next time: when it's time to sign the surgery consent I plan to write in and initial an addition that reads, "No blood draws, IVs or blood pressure to be done on either right or left hand or arm."

Hey, I'll be thinking of your tomorrow and holding you in my prayers. Let us know what you decide and how it goes,
Binney

claisy · Posted: Tue Nov 16, 2004 3:44 pm Post subject: Re: Lymphedema phobia???

Hi Binney...I meant to add the same thing you just did. I had appendicitis last November and I also wrote on my left arm the same thing. Like you, I got some chuckles out of it, but I didn't care. We have to look out after our own bodies, because even people in hospitals don't always do the right thing!!!!! I can't tell you how many people wanted to see my arm after word got around what I had written on it. My anesthesiologist commented about that being a very good idea.

Guest · Posted: Tue Nov 16, 2004 8:05 pm Post subject: Re: Lymphedema phobia???

Hey Claisey, thanks for posting the LE bracelet site. I knew I saw it somewhere...chemobrain strikes again...lolol

CeeCee good luck on Friday. While you're in the hospital they should send around a physical therapist to show you how to get your range of motion back. I think the general rule for the first couple of weeks is not to put your elbow higher than your shoulder.

You will probably have one or two drains post surgery, that they'll leave in for a week or so. They'll teach you how to empty it and measure the output. When the output goes down to a certain level they'll remove the drain (it is painless). Sometimes the 'standard' # of days they leave drains in isn't long enough, so pay attention to your flow and you will have a pretty good idea if it needs to stay in a little longer. First time around mine came out a little early for me and I developed a seroma (pocket of fluid) which had to be drained, so the second time around I had them leave the drain in a few days longer and voila no seroma.

Get yourself several men's front button up shirts. You will be able to pin the drain inside and the baggy shirts are easier to get in and out of. Forget wearing anything pull over for a while, it is just not comfortable.

If you have any other questions, ask away.

Hugs & Calming Thoughts,
Bree

leo · Contributor Joined: 23 Sep 2004 Posts: 1575

Hello All

I am sorry my comments caused such a reaction. Honestly, what I was told is that if you do not have establish lymphedema, your arm could be used only if really necessary if no other alternative was available. Several doctors have issues with foot stick because of the higher likelihood of infection.

Anyway, I am fully aware of this big problem, and will definitely read more about this. Like I said, if I do not know enough about the subject, or if what I was taught is wrong, it is good to have feedback from you guys as well.

regards,
Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

MuttsMom · Guest

chemo brain continues almost 3 years later, or that's my story and I'm sticking to it. For the lady that asked about raising her arm after surgery. The wanted me to start using my arm in the hospital, slowly at 1st of course. If you don't raise it over your head, you won't get full range of motion. Take it slow and do the spider up the wall motion. I babied my arm because the mastectomy doesn't hurt, but those nodes being removed are another story. I was so afraid I'd hurt myself, I didn't do much. My surgeon was not happy with me and told me to lift it up as high as I could and keep doing a little more each day, if not, I'd be having surgery for scar tissue.
I hope this helps
Prayers and you'll do great through surgery.
Nancy

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