Is it now possible to refuse removal of nodes?

The problem with comparing LE studies is that they're all comparing apples and oranges. Until the lymphedema researchers establish a commonly accepted standard for diagnosing LE, there will always be bizarre discrepancies between and among studies.

Another factor that challenges comparison is the follow-up time -- as we all know, LE can develop even years after breast cancer treatment, and the studies cited here vary considerably on the time of follow-up. If you don't have a standard time period, than any comparison is meaningless.

A third major problem with these studies is that they don't take into account truncal lymphedema, which certainly can't be identified with "a >2-cm difference in forearm circumference" compared to anything. As a matter of fact, truncal LE seems to be on the rise with the increase in SNB + rads -- which indicates that rads has a higher-than-expected rate of causing LE of the breast/chest.

So -- jury's still out. Bottom line, we're ALL at risk and need to consider how best to lower that risk through actions we can take to protect ourselves.

And of course to continue to support one another with encouragement, empathy, advocacy, shared experience, and up-dated information.

Hugs, and be well!
Binney

TonLee,

The only rad oncologist I have seen in this journey was a gentleman who tried to scare the Bejeesus out of me making it sound like I would be dead in a couple of months if I don't do full breast, supra-clavicular and axillary radiation. Needless to say I never say him again.

If you would have looked to the links I posted you would have seen that Dr. Dooley is NOT a Radiation oncologist.  He is a breast surgery oncologist. I have posted the link to his CV, with a whole list of various studies and articles he has done over the years. I would think that his experience with probably thousands and thousands of patients makes him kind of know what he is talking about.

He had told me that in all the lvl I ALNDs he had done in his life, he only had 3 patients to develop lymphedema, compared to over 5% he has seen in radiation. Also, the board's recommendation for me was FULL ALND followed by radiation (due to the 3 mm tumor in my sentinel node) - decision he had fought and proposed to do a lvl I only and only if any nodes show possible to go forth with the radiation. He knew from the start how important QOL is for me, I had stressed out very clearly that I am more interested in the quality of my life than in the duration of it, but at the same time he was very worried due to the complicated tumor that I had (DCIS, LCIS, ILC, IDC and invasive cribriform + tumor in SN) so he tried to  choose the procedure that, in his experience, would bring me the safest outcome without distorting my QOL.

Right now I have a very mild truncal lymphedema - it affects only the area under my arm. And it is very well controlled with MLD and kinesiotape.

Thanks JBin.  I'd hate to think I spent all those hours scouring radiation oncology journals for nothin.

lago, you wear your sleeve everyday for 6 hours? I wore it every now and then when it first started acting up but now I am guilty of not putting it on and just doing my excercises

i wish i had refused my lymph node dissection!  That said I do have one point to make, if they do not know how many nodes are positive how do they stage? Since my diagnosis I have had to stop work due to chemo caused nuropothy and lymphodema and SS disability wants to know specifics about stage, etc.

Well, I had a Total Axillary Node dissection and I'm going to have radiation of my left breast, axilla and up to the Collar bone, so I know what I have to look forward to...

Letlet I am now wearing it every day for 6 hours. I just started doing it that often. Before my fingers were hurting so much I couldn't put them on myself. I had to wait till my husband got home. Finally this weekend my fingers got to the point where I can now put them on. I still have some swelling and tissue that needs to be softened up but in time I know it will get better.

TonLee I still have cording on both sides. My LE PE said they will stretch out but she doesn't think they will ever go away. As I mentioned the non LE side has worse cording but my range is almost normal now from stretching. What does your doctor say about this cording. I wouldn't wait on this. Get it checked out. Make sure you are doing the correct exercises for this.

Part of the reason, possibly the main reason they take nodes is for staging. Yes they can do it with a needle but if there is micomets or they miss the spot where they are invaded I would think they could miss the spot and not get as accurate information as an actual dissection.

TonLee,

 As you said, it's all about luck. I had axillary web cording, it was resolved by PT and my boyfriend (was shown by the PT how) breaking those cords once or twice a day - hurts like crazy. My mild LE looks likeI have a "fat" underarm, not even very fat. As I am on my way of losing the chemo weight, once I get to my normal weight I'll be able to really say how big of a deal the LE is, because right now I am not entirely sure how much of it is LE and how much fat.

And like you, no family history,  eating right (my friends used to say I eat "disgustingly healthy), active, my only thing was that I'm a smoker. But I also was hyper thyroid, and that (in the theory of BC and hypothyroid being linked) would have reduced my chances to nil, right?

The LE therapy involves massage and kinesiotaping.

The cording - that's a different matter. It involves stretching and "breaking" the cords - quite painful when it's done, but it only lasts 1-2 seconds and then the relief is tremendous. My boyfriend was shown by the PT how to do it, when I had the massive cording he had to do it 1-2 times a day for about 10 days before it all went away. The effect would last for quite a few hours, then the cording would come back. After the cords were broken, it would last longer and longer each time until one day they didn't come back.I had about 9 cords of which 5-6 were supperficial and the rest were deep, all in the axilla.

My BS said that cording is a scarring of the veins and it acts like a tourniquet on the arm, makign it unable to get stretched straight. He actually broke them for me the first time when I went to see him about it. Talk about pain!

I am left with none after the regimen of "breaking" them. I've been "stretching exercise"- free for this issue since mid-October. My BS said that it is possible that they might come back at a later time, but that "breaking" them will solve the issue again.

Day, thanks for that info on "cording" -- I had never heard of it. I am so glad though that you persisted and figured it out!!

I get trunctal LE but have found that I can keep it almost in check (and doesn't bother me too much) if I go to the gym and do the upper body weights 4-5 times a week. (at least every other day). I am not quite sure why this works, but it works for me. I figure it is also good for bone density! (all that weight bearing exercise - and I do legs while I am there, what the hay...) 

I feel I need to weigh in on this thread--we do share our experiences, but try really hard not to post misinformation that can mislead women who read this thread:

1) National experts on axillary web syndrome and cording do NOT recommend intenionally snapping the cords as they are lymphatic vessels, and they've had a few cases of women developing lymphedema after this was done. If the cords break during gentle manipulation, that is okay.

Lago-, cords can linger, but they are not universally permanent.

Day--cords are not veins--they have been biopsed and are clotted lymph vessels.

Please read the AWS page for more details

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

2) TonLee--you're relatively new to the thread, and perhaps are unaware of Binney's expertise, and I found your response to her disrespectful

What Binney told you--and this is the science of lymphology--if you are interested in reading articles, I suggest you read the AHQR technology review of lymphedema which reviewed many articles--the true incidence of lymphedema can NEVER be determined as their is no one diagnostic criteria. The 2 cm discrepancy is a "gold standard", but was created by 2 PT's for one study--it's used because it's cheap and easy-but there's no science to prove it diagnoses lymphedema. Perometry is far better--although not so good for hands, but quite expensive.

The new NLN position paper on treatment describes diagnosis quite well:

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

Here is the AHQR/CMS review:

http://www.cms.gov/medicare-coverage-database/details/technology-assessments-details.aspx?TAId=66&bc=BAAgAAAAAAAA&

There is enough misinformation about lymphedema, the goal on this thread is not to perpetuate it, and to treat everyone with respect. We haven't had the issues that have shown up on on other forums and this forum has always felt safe and accurate, and I'd like to see that continue.

Kira

Day, Our personal experiences are very important and that's why we share them. I'm fortunate to meet on-line and in person with Jodi Winicour PT who has treated hundreds of cases on AWS and based on her broad experience and the adverse outcomes she's seen with intentional snapping of cords, I feel that that concern should be stated.

Our personal experiences are valid, and we help when we share them, and I wrote the AWS page on stepupspeakout, and shared my experience, and then I emailed Jane Kepics, Jodi Winicour and Elisabeth Josenhans, so I was able to tap into PT's with experience of treating hundreds of cases.

Based on Jodi's experience of seeing a few cases of sudden and irreversible LE after intentional snapping of cords, I feel I need to post that concern.

In medicine, we talk about an "n of one"--which is one person's experience. It's yours, its real and to try and gain perspective we try and get information on a lot of people's experience.

That in no way invalidates your experience. But IMO, sending you home to have you and your boyfriend treat the webs as you had limited PT benefit, is far from ideal.

I'm not refutting your experience or the trust you have in your surgeon. 

However, I stand by my concern about intentionally snapping the cords as a method of resolving AWS.

We recently added a page for health care providers and the risk of AWS and LE is discussed

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

Thank you for clarifying and explaining in more detalil.

Kira

Yes, kira, but from that to saying that I intentionally posted imisinformation is a great step. You practically accused me publicly of lying, and then talked about respecting each other?!?

Day,

My cords are pretty minor and get better with weight bearing exercise...but thank you for your concern