Lancet: 1 in 5 women will get LE after bc

kira66715 · June 2013

This is a meta-analysis--a review of 72 studies, and as there is no one diagnostic criteria for LE, the results will be variable:

http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045%2813%2970076-7/abstract

The Lancet Oncology, Volume 14, Issue 6, Pages 500 - 515, May 2013

doi:10.1016/S1470-2045(13)70076-7

Cite or Link Using DOI

This article can be found in the following collections: Oncology (Breast cancer)

Published Online: 27 March 2013

Incidence of unilateral arm lymphoedema after breast cancer: a systematic review and meta-analysis

Dr Tracey DiSipio PhD a

, Sheree Rye MAppSc a, Prof Beth Newman PhD a, Sandi Hayes PhD a

Summary

Background

The body of evidence related to breast-cancer-related lymphoedema incidence and risk factors has substantially grown and improved in quality over the past decade. We assessed the incidence of unilateral arm lymphoedema after breast cancer and explored the evidence available for lymphoedema risk factors.

Methods

We searched Academic Search Elite, Cumulative Index to Nursing and Allied Health, Cochrane Central Register of Controlled Trials (clinical trials), and Medline for research articles that assessed the incidence or prevalence of, or risk factors for, arm lymphoedema after breast cancer, published between Jan 1, 2000, and June 30, 2012. We extracted incidence data and calculated corresponding exact binomial 95% CIs. We used random effects models to calculate a pooled overall estimate of lymphoedema incidence, with subgroup analyses to assess the effect of different study designs, countries of study origin, diagnostic methods, time since diagnosis, and extent of axillary surgery. We assessed risk factors and collated them into four levels of evidence, depending on consistency of findings and quality and quantity of studies contributing to findings.

Findings

72 studies met the inclusion criteria for the assessment of lymphoedema incidence, giving a pooled estimate of 16·6% (95% CI 13·6—20·2). Our estimate was 21·4% (14·9—29·8) when restricted to data from prospective cohort studies (30 studies). The incidence of arm lymphoedema seemed to increase up to 2 years after diagnosis or surgery of breast cancer (24 studies with time since diagnosis or surgery of 12 to <24 months; 18·9%, 14·2—24·7), was highest when assessed by more than one diagnostic method (nine studies; 28·2%, 11·8—53·5), and was about four times higher in women who had an axillary-lymph-node dissection (18 studies; 19·9%, 13·5—28·2) than it was in those who had sentinel-node biopsy (18 studies; 5·6%, 6·1—7·9). 29 studies met the inclusion criteria for the assessment of risk factors. Risk factors that had a strong level of evidence were extensive surgery (ie, axillary-lymph-node dissection, greater number of lymph nodes dissected, mastectomy) and being overweight or obese.

Interpretation

Our findings suggest that more than one in five women who survive breast cancer will develop arm lymphoedema. A clear need exists for improved understanding of contributing risk factors, as well as of prevention and management strategies to reduce the individual and public health burden of this disabling and distressing disorder.

Funding

The National Breast Cancer Foundation, Australia.

Binney4 · June 2013

A clear need exists for improved understanding of contributing risk factors, as well as of prevention and management strategies to reduce the individual and public health burden of this disabling and distressing disorder.

Uh, yes. I'm not sure how much this study cost, but if they'd have asked us we could have told them this for free!

Geesh!
Binney

AmyQ · June 2013

Lucky me - 1 in 5 and I win. My PT can hardly believe with the removal of only 3 nodes I get LE, albeit mild. My surgeon took precaucations during my hospital stay by warning staff my arm was off limits for blood draws, blood pressure etc but even so...oh well it could always be worse.

NatsFan · June 2013

Geez, and all those surgeons and top rated hospitals who swear that none of their patients EVER get LE!!! Grrrrrrrrrrr!

kira66715 · June 2013

And this is only unilateral arm LE: imagine if they included breast/trunk/bilateral. The numbers would soar.

cinnamonsmiles · June 2013

AmyQ, I got mild LE from just sentinel nodes removed on both sides, and JUST ONE axillary node on the right. I don't even know how the axillary was removed. My surgeon has since left the area and I can't find her and the clinic I go to won't or can't tell me where she went so I could ask her.

Anonymous · June 2013

The National Breast Cancer Foundation, Australia.

Did you folks up north (US etc) not realize we have to endure "much ado about nothing" as standard fare "down under"? It's all about endless studies and rhetoric but at the end of the day where the rubber meets the road, this is just lip service. The system is largley in a froth about what best practises are and are forever buried in meetings, more studies that cost gazillions, but what we really need is actions at the coalface.

Marple · June 2013

My surgery was done in 06 and since I haven't seen my surgeon since that year he has no idea I have LE. When I asked his nurse about my fat underarm several weeks post surgery, she said, "that's normal". Blech!

kira66715 · June 2013

Musical, it's so frustrating. Yes we need research, but we desperately need care--good quality care, at reasonable rates and with good access, and informed providers.

Here in the US, it's pretty much the same story--our medicare insurance--for people over 65 doesn't cover garments at all, many of the other insurances have severe limits on treatment and garments, and organizations that are out there to champion lymphedema--the National Lymphedema Network, Lymphatic Research Foundation--treat patients as second class citizens or after thoughts, and so many of the researchers are caught up in the academic game, they don't really care much about the people they're researching.

The American Cancer Society used to help out with LE treatments and garments and changed its priorities to only cover transportation to treatment now.

So, we up north get a lot of lip service too. When we need action.

I think what action there is, is being generated by us patients.

Anonymous · June 2013

I think what action there is, is being generated by us patients.

Kira you've said a whole lot there...and we are infinitely grateful for the likes of you guys who are great researchers on this forum to help others. This forum is a great place, even though Im from waaay over on the other side of the pond, it still follows we all have 2 eyes a nose and a mouth. We're all humans and it would be nice to have some consistency and get on with it instead of jurisdictions re-inventing their own wheel.

I can understand that dollars only stretch so far in our systems in general, whether its based on insurance as my understanding is of the US, or a social welfare like ours, but when I see things like companies exploiting, or the whole pinkwashing thing (ugh), or research without the practical follow up which is what its for in the first place, then it leaves a lot of questions. I see Insurances (well at least here) as nothing but unknown slippery propositions where they take with one hand and find any excuse to with-hold with the other. In other words theyre largely a bunch of rogues and theyre getting worse and worse.

As far as your Insurance or the lack of it for the over 65's... well that is apalling!! They are basically put on the scrap heap to fend for themselves. What if they dont have the finance to buy these garments? do they fall through the gaps?. What happens to their LE then? I have to say I no-where-near understand the Medical Systems of other countries and it obviously requires that one looks at the big picture. Our oldies here are taken care of but youd have to ask at the expense of what else?

So, to come back to the point, I see here our public health system is getting squeezed tighter and tighter, that is falling in on itself, and for much less than any credible reason. What annoys me is that some of that at least is through pure wastage. Just one example is the fancy shiny pamphlets strategically placed everywhere within the hospitals corridors corners and vantage points, giving concise guidelines on what your rights are...but enforcement? LOL what a joke. Thats why I call it much ado about nothing. To actually get anywhere if you have a grievance you have to push push push. Then to add to the mix we have people falling over themselves because theyre operating with hazy borderlines, lack of integrity and with a lack of organization because funding cuts and/or laziness in general.

carol57 · June 2013

I'll add another study-related gripe. This and many other studies includes the true comment that there no standard diagnostic criteria or methods or follow up periods in the studies, which makes it hard to compare the apples/oranges studies and renders any quote of LE risk a joke (well, my words, not what they actually say in the study reports). So why in the hell doesn't the LE research community--which doesn't seem to be that huge--get together and decide on some common guidelines for how to study LE??? My knowledge of the scientific method is seventh-grade level, but even I could design better studies than what they're doing. And if they could agree on common ground for study basics, then they wouldn't have to dwell on just defining LE risk and actually move forward on research that might actually help us.

Musical, the NLN is raising money to publish some kind of LE patient kit they will give to hospitals and breast centers, but I'd bet my last dollar that few of the kits would ever be given to patients, because that would imply that the hospitals, surgeons, and breast centers would actually have to defend their rotten deviations from accepted LE care and risk-reduction guidelines.

I guess I got up on the cynical side of my bed this morning. And my arm hurts way too much today, so it's a wicked reminder that as you all point out, the pile of research is getting us nothing toward actually doing something about this stupid condition.

Rant over. Time for bed.

Carol

Anonymous · June 2013

Cynical maybe, but realistical surely! Rant appreciated Carol....lol ... sleep on that

kira66715 · June 2013

I totally agree with both of you. The LE research community in the US is small, and aging, and in my opinion completely dysfunctional. It's hard to get funded and the quality of their research tends to be poor and they have never, ever come up with a definition if LE so the outcomes are unreliable at best.

Follow the money: LE hasn't had drug companies to sponsor research and they get funded from vendors of products, a bit through Avon and other bc organizations and federal funding is really tight now.

A noted researcher who seems to not care one bit about the people with LE has bemoaned the lack of funding for years and it translates into difficulty getting promoted in academia.....

Another researcher who is a full professor and does care is so careful never to offend anyone that this person runs in the other direction from advocacy.

In the US we have some major LE therapist training schools and they are much more interested in filling their classes than advocacy or even supporting the therapists they train as they take on real patients.

It is discouraging and infuriating

And LE therapy and garments are poorly covered by insurance. I had a DME supplier of a large company tell me they did LE as community service as they lost money on every garment

I currently sit on the national board of a LE organization and was called by the president when I was nominated to tell me that they are NOT an advocacy organization and they were concerned about me as I had a reputation for advocacy....I had dared to question the NLN.....

Not sure what the answer or solution is, but I'm sure it comes from patients, not the LE establishment