Cancer patients and their doctors often focus on beating the disease first. But new research shows they also benefit by early monitoring for lymphedema, a devastating side effect of cancer treatment that can show up years later.
Lymphedema is a painful swelling of an arm or leg that can occur months or even years after cancer treatment. Breast cancer patients, who often have lymph nodes removed during diagnosis and treatment, are particularly susceptible. But any cancer patient whose lymphatic system has been damaged by radiation or the removal of lymph nodes is vulnerable. That includes patients treated for prostate and gynecological cancers, head and neck cancers, testicular cancer, bladder cancer, colon cancer and melanoma.
The lymphatic system normally helps transport body fluids, but in someone with a compromised system, fluid can build up in an arm or leg, depending on where the lymph nodes were removed. If lymphedema sets in, a limb can swell far out of proportion to the rest of the body, and if not treated quickly, the condition can be irreversible.
But an important new study conducted by the National Institutes of Health and the National Naval Medical Center shows that cancer patients benefit if their treatment plans include early interventions to monitor risk for lymphedema. During the five-year study, researchers measured the upper limb volume of 196 newly diagnosed breast cancer patients to establish a baseline before they had surgery.
After surgery, doctors developed a lymphedema surveillance method in which they continued to measure upper limb volume. In the study, 43 women, or 22 percent, developed “subclinical” lymphedema, which means it typically would not be detected in a routine exam. The women were quickly prescribed pressure garments, which are tightly worn around the affected limb. All of them showed improvement that put them at or close to the presurgical “normal” state. The study was published in the online edition of the journal Cancer.
The study suggests there’s a benefit to using more sophisticated tools to track lymphedema, such as devices that use electrical signals to assess fluid changes in the body. Most physicians currently rely on tape measures to track changes in limb circumference and size or wait for a patient to report a loss of mobility or swelling in an arm.
Dr. Steven Schonholz,, a breast surgeon and medical director of the Breast Cancer Center at Mercy Medical Center in Springfield, Mass., says that by using better tools to measure limb volume, doctors can now identify lymphedema in its earliest stages, long before a patient is even aware of the problem.
“If patients aren’t treated at the earliest possible indication of lymphedema, it is less likely to be effectively treated,” Dr. Schonhlz said in a press release. “The condition may require lifelong costly treatment and, more importantly, have an enormous impact on a woman’s self-esteem, function and quality of life.”
Every cancer patient should talk to his or her doctor about lymphedema, and ask about monitoring and early detection, as well as baseline measurements of limb volume before treatment. In addition to being monitored for lymphedema, patients need to know that even minor overuse of an affected limb, such as carrying a heavy bag or typing for hours on a keyboard, can trigger the swelling.
To read more about lymphedema, click here.
Healthy living doesn't happen at the doctor's office. The road to better health is paved with the small decisions we make every day. It's about the choices we make when we buy groceries, drive our cars and hang out with our kids. Join columnist Tara Parker-Pope as she sifts through medical research and expert opinions for practical advice to help readers take control of their health and live well every day. You can reach Ms. Parker-Pope at 
The easiest and most pleasurable way to eat well is to cook. Recipes for Health offers recipes with an eye towards empowering you to cook healthy meals every day. 
From 1 to 25 of 49 Comments
Tara–Excellent posting on a neglected very important clinical issue.
— MARK KLEIN, M.D.Looks like some of those lazy, fat, self-indulgent, self-inflicted cancer suffers who were being picked on earier might have a reason to look fatter after all. Shocking.
So how do the bigots tell the difference between those with this side-effect (or other medical cause) and those who are lazy slobs? They can’t, so better treat us all like dirt just to be on the safe side.
My sister-in-law has suffered this in her legs and although the Drs caught it fairly early she still lost her slim legs to it. The difference in her self-esteem has been mostly due to being treated like a fat person even though only her legs are affected. People’s gaze seems drawn to the fattest part of your body so they can label you weak, inferior and lazy.
This is just another reason to raise awareness in the snotty-nosed-up-themselves skinny community. Maybe next time before they push her aside in her subway seat as if taking up a full seat is a crime, they will at least wonder if she might have lymphedema.
— MaryThis is good information for patients at risk to learn of, but needs to be put into context.
The risk of arm lymphedema is low, with only a very small percentage of patients treated for breast cancer developing this condition. With new ways of identifying lymph node cancer spread in breast cancer by performing less extensive surgery, such as the sentinel lymph node biopsy technique, where only one or two (rather than ten or more) lymph nodes are removed for analysis, there should be an even lower risk of lymphedema associated with axillary (armpit) surgery now than in years past.
The more extensive the axillary surgery, the greater the risk. If the surgeon “strips” the axillary vein of lymphatic tissue during the procedure, the risk of arm lymphedema is markedly increased. Other surgical techniques employed by a well trained physician should keep the risk of lymphedema to a minimum. Ask your surgeon if she uses these techniques before you consent to this operation.
Patients should be mindful of things that can increase the risk of lymphedema of the arm if they have had axillary surgery. Avoiding blood pressure readings from the affected arm, not allowing blood draws from the arm at risk, wearing gloves when washing dirty dishes or gardening, avoiding “dirty” cuts, and, if they occur, getting them cleaned and rapidly treated will mitigate the risks.
While minor overuse of an affected limb can trigger swelling, this risk is not enough for most individuals to be considered disabled to do work activities which require the use of the arm.
Furthermore, with the importance of continued physical activity in the cancer patient as discussed in a recent article by Ms. Parker-Pope, this risk should not serve as an excuse to prevent people from exercising regularly.
Up front education on the risks, and early intervention if a problem should occur are the keys to minimizing the morbidity of lymphedema
FROM TPP — Thanks for taking the time to comment but I’m curious about your statement that the risk is low. In this study 22% of breast cancer patients developed subclinical lymphedema, which doesn’t sound low to me. In the previous Times story, linked to in the post, it cited studies that suggest 30 to 40 percent of breast cancer survivors develop lymphedema, sometimes years after surgery.
— DAVID HOWELL, M.D.Unfortunately, the hyped-up Cancer industry ignores more important issues;such as-the elimination of lymph node dissections which cause this problem to begin with.
— scholarsearchIt is pitiful that with all the millions of dollars spent in the “Cancer War” semantics, that there has been little progress that has made a major difference.Cancer drugs are bad for the brain,and if any enlightened individuals in medicine could get away from the “Cut,slash and burn” therapies that do little to “heal” the body, and downplay the collateral damage,perhaps we would move into a more progressive medical paradigm and out of the current funk.
I suffer lymphedema in both legs thanks to a hereditary condition called lipedema. I certainly don’t wish cancer OR lymphedema on anyone, but if cancer-related lymphedema gets lymphatic disorders onto the medical establishment’s radar screen, I think it’s a good thing. The lymphatic system is far too little understood and too often ignored by doctors and medical schools, and we need not only better tools for diagnosis, but better treatments and better information about the genetic aspects of lymphatic disorders.
— JaneTo clarify:
The risk of ***clinically significant*** lymphedema is low.
Some of the longitiduinal studies you allude to may be subject to selection bias, or other reporting biases. They may also refer to patients treated during times when axillary surgical techniques were less nuanced than today.
While is is noble to try to avoid any side effects, it is the ***clinically significant*** side effects that are of greatest concern.
— David Howell, M.D.Lymphedema also occurs when cancer surgery on the lower limbs includes stripping of lymph nodes. What is amazing to me is how a surgeon can just ignore it. A friend of mine had a large cancerous tumor removed from her thigh. Lymph nodes in the groin were removed as well. Shortly thereafter her knee was swollen. Her surgeon ignored it until her entire lower leg was painfully swollen. Only then was she sent for treatment. Needless to say her leg will never be a normal size, she must wrap it daily and it makes walking difficult. Too many surgeons seem to have the attitude that all they need to do is to remove the tumor and the patient just gets on with his or her life. In this case the treatment for the lymphedema came only after more than a year and a half after surgery and more than a year after she had very visible swelling - which even I - a layperson noticed and questioned.
— a friendDavid Howell, M.D. - Subclinical lymphedema can cause pain, numbness, and a sense of heaviness in the limb. Even mild lymphedema has a substantial impact on quality of life. Radiation treatments also increase risk of lymphedema.
I disagree that it is clinical significance that should determine importance. Shouldn’t quality of life and the patient’s experience determine the importance of a side effect? In the case of lymphedema, changes may not be clinically apparent for some time after the patients day-to-day life is impacted.
— MPDr. Howell, perhaps you don’t get this. Catching lymphedema at the subclinical stage can prevent its advancement to the clinically significant state. As a woman who was mortified by the risk of lymphedema before her lumpectomy, and who worked with her surgeon to avoid full axillary dissection, I can assure you that a subclinical finding would be enormously important to me. Of “greatest concern” to me is avoiding the clinically significant condition (after the ultimate concern of avoiding recurrence.)
— Karen CourtrightSurgeons are not scientists. They are basically machines programmed to do a specific task; they generally do not understand what they are doing. If you question them the most you can expect is a simple recap of what their training has told them.
If you want surgeons to behave differently, you must change their training. Unfortunately most training is successful in the same what that Microsoft operating systems are successful, and most changes are successful in the way that Microsoft operating system upgrades are successful.
— XCSkierDudeAnother risk factor for lyphedema is reconstruction surgery after mastectomy. I noticed very slight swelling and an odd sensation in one arm a few months after my reconstruction, which followed mastectomies with lymph node removals and radiation. I consulted a physiatrist (an M.D. who treats pain, essentially) who specializes in lymphedema treatment and was fitted with a compression sleeve and referred for physical therapy including specialized massage. Currently, I wear compression sleeves and fingerless gloves on airplane flights and closely monitor both my arms for signs of swelling. Catching this early has so far kept my lyphedema from progressing.
— PennyI have been thru 2 bouts of cancer in the last 23 months. Cancer treatment is all about the $$$$$$$$ and has little to do with the patient.There will never be a cure–too many billions of $$$$$ involved.
— Phil AIn response to poster #8
This may just be a question of semantics.
If lymphedema causes pain, numbness and a sense of heaviness, it *is* clinically significant. Pain, numbness and a sense of heaviness CAN impact on quality of life.
If a patient’s day to day life is impacted, then the cause *is* clinically significant.
Subclinical lymphedema would mean that there is swelling that does not cause symptoms. No symptoms—no impact on quality of life, except perhaps psychologically for some, as with poster #9, which indeed is a very real problem that should always be addressed.
There is no substantial data to show the percentage of subclinical lymphedema that goes on to clinically significant lymphedema, nor that catching it early will prevent it’s advancement to clinically significant lymphedema that I can find on a brief review of literature easily available on the Internet through PubMed. It would seem to be a logical conclusion, but there is no data to support this. I hope that this would be true, but would like to see hard data.
The study reported by TPP above is only available for review in abstract form. What is reported in abstract form only addresses changes in size of the arm, and it does *not* address the study participant’s symptoms nor their quality of life. The average follow up is also short, at just less than five months. The potential for lymphedema to occur (and reoccur) lasts for years. I look forward to reading the full paper.
Quality of life issues are of paramount importance to me personally and professionally. I hope to see a study on this topic that addresses issues on quality of life as it relates to the quantitative measurements noted.
We, as physicians and patients, should not make unwise extrapolations about studies that speak to changes in a quantitative measurement to hopes about quality of life issues.
To paraphrase a line from Jerry Maguire…”Show me the data, (not just the anecdote.)”
— David Howell, M.D.It is so bizarre how a doctor can fuss about semantics when we are talking about quality of life. What is the point of surviving a disease when quality of life remains problematic?
“Clinically significant” means symptomatically significant. If the patient experiences it and it is unpleasant, it exists.
Doctors like the one who made the posting above, who are in denial, are a dime a dozen, and usually do not change. They will only be pushed out of practice through competition–patients don’t want to patronize them–or by retirement. Thomas Kuhn, in his brilliant “Structure of Scientific Revolutions”, had it right. Scientists who cling to outmoded ideas in the face of new evidence rarely change their views in the face of the paradigm shift. They just die, and with them, their incorrect ideas.
— appleNot that Dr. Howell’s comments need defense, I just believe a few do not understand the point he was making, including the author. The difference between sub-clinical and clinically significant lymphedema is whether a patient or doctor notes symptoms or signs. If a patient walks in to the office and complains of pain, or feels one limb is larger than the other, this is clinically significant. However, this study was looking to monitor the pre-op and post-op volume changes in a patients arms and they set standards of diagnosing lymphedema where it would not have been diagnosed without the use of sophisticated equipment, this is sub-clinical. This study is NOT looking to find the incidence of lymphedema its threshold for diagnosis was purposely very low. Another study would be necessary to determine how many of the patients with sub-clinical lymphedema go on to develop signs and symptoms of lymphedema, this would be an important percentage. However, because the treatment of lymphedema is straight forward (wear compressive stockings over the limb) it is appropriate to treat all patients with sub-clinical lymphedema which shows positive results per this study.
I believe Dr. Howell’s point simply was that while it’s good to monitor for lymphedema and treat when it exists. It is surgical technique that will limit the occurrence of this side-effect and that because clinically significant lymphedema is not very likely post-op patients should not forgo surgery because of this side-effect. Rather, use it as a talking point with your surgeon to make it less likely to happen.
As an aside, the article used for this blog post states that studies show the occurrence of lymphedema ranges from 7-47% (in other words it all depends on how lymphedema is defined), we should not get bogged down in the actual percentages there are just too many variables at play.
http://savvydoc.wordpress.com
— SavvyDocLOL. Dr. Howell beat me to the response apparently, thats what I get for getting distracted while writing my comment.
http://savvydoc.wordpress.com
— SavvyDocI am a 12 year breast cancer survivor and have had lymphedema for 11 years. It is a constant reminder of my cancer and of the limitations that have been put on me. At times it is like I am disabled but no ones knowns or understands. In the last 4 years I have had cellulitis 4 times. Twice I ended up in the hospital for a week. I would have prefered remaining bald then developing lymphedema!
— barbWhat would you say if I was a person with neurofibormatosis and had an MRI of my chest in August. The MRI showed necrosis?/bleed in that area? Would it wise to do a biopsy being the these tumors can turn cancerous??
FROM TPP — I would encourage you to seek second or third opinions from known experts to make a decision rather than seek advice on this blog.
— msisterFirst off, this article is nice to get the word out but some of it needs some correction. Lymphedema is more than swelling in an arm or leg, it can be anywhere in the body, breast, face, neck, arm, leg, trunk, genitals, organs, etc.
As far as every patient needs to talk to his doctor about developing lymphedema, well that needs to be the other way around. Doctors need to be educated to talk to patients! Thankfully lymphedema advocates are changing this one doctor at a time but medical schools need to focus on education to medical professionals, patients rely on their doctors to tell them what is wrong and the consequences of surgeries.
Lymphedema can not only be from cancer surgeries, it can be primary meaning people are born with it, it can develop from secondary triggers later in life in primary patients as well, and it can also develop from infections, bug bites, any trauma of any kind at any age.
I am a 14 year cancer survivor. I was told I had secondary lymphedema, which was wrong, I am a primary patient with secondary triggers. We are having a debate later in May about this, there is no research to tell us, are we really all primary patients with secondary triggers or are there truly secondary lymphedema’s out there?
I’m the content editor at ELymphNotes, which is an online lymphedema magazine. Watch our forum for this debate.
Mary, have your sister-in-law get in touch with me. She should join a support group to be able to better handle problems facing rude people like she has encountered. The best defense against rude stares and comments is to educate those people. Walk over to them, talk to them. They only way change is made is through education. The advocates like myself and my support group Lymphland, are working hard at changes not only in educationg, but insurance coverage and legislation for every state to recognize March 6 or Oct 17 as Lymphedema Day.
We are seeing alot of new research and studies being done. One such study is lymph node transplants, and another is the great Bioimpedance machine that can detect stage 0 lymphedema before many symptoms start. This is a great tool for primary lymphedema patients who worry about their children developing lymphedema, the kids can be monitored and lymphedema caught at stage 0. The results of the study will be more available in the next few months. My support group is helping to advocate for clinics to acquire this equipment, this can prevent children from becoming like some of us, on disability and almost untreatable.
Another thing not mentioned in the article is Combined Decongestive Therapy which is the gold standard treatment of lymphedema. It is compromised of manual lymph drainage, compression, special exercises to promote lymph flow, and skin care. It really makes a difference in patients’ lives to have therapy.
Anyone that wishes more information, help finding a therapist, any questions at all may contact me via Lymphland.com by clicking on the email Tina button.
Tina Budde, Patient Advocate
— Tina Budde of Lymphland International Lymphedema OnlineNew York State Lymphedema Network Owner
Lymphland.com Owner
Lymphland International Lymphedema Online (LILO) Owner
ELymphNotes Lymphedema Magazine Content Editor
NLN Member
American Society of Lymphology Member
Ask-the-expert Panelist
New-York-State-Lymphedema-Network Support Group
I reached out to Tara in her June 1, 2004 posting on lymphedema while she was at the WSJ, but no response. Maybe others will benefit from this posting. I could go on and on about what I have suffered in my 9+ years with lower-extremity lymphedema. Forgive me for this micro-rambling, but it is indicative of all the clutter that is out there that offers no feasible solution, the ongoing misinformation and the complete helplessness I’ve withstood from all walks of life, despite all the efforts I’ve made to try and find ways to beat this. Mine was detected early (and at age 35), and I can tell you that early detection does NOT prevent lymphedema. Detecting it early doesn’t mean that you won’t suffer less, as this article and some allude to. Once you’ve got it, it never goes away; at best, it will stop manifesting itself or the symptoms will wane, but that is extremely rare. This is a chronic, progressive disease that has no cure! It is whimsical, to make matters worse. In my case, I got lymphedema 6 months after a 1998 surgery for cancer. Despite religiously doing MLD, bandaging at night, special exercises and wearing stockings, it quickly progressed, which led me to have no faith in all that great 100-year-old technique. Yep, they’re still prescribing what they were back a century ago. Doing the exercises, the self-massage, wrapping my leg (one at that time), unwrapping the mummy contraption of Ace-like bandaging, underpads, padding around the toes, etc. to prepare it for a next night’s use and hand-washing the stockings (that must hang dry) took about 3 hours per day! How do you pack and travel with all that garbage? Not to mention partake in intimacy looking like a mummy? The vendors have nothing new…they just push more equipment. What with all they say you need, you’d require a dedicated room just for all those durable medical goods that have no positive effect. They talk behind the other’s back, trying to out-benefit the other; meanwhile, none of it works. Don’t get me started on the scam vendors of Jobst, Beiersdorf and Sigvarus. In fact, for us with lower-extremity lymphedema, they’ve even recommended toe-less hose, because they’re cheaper. When I’ve confronted them about this negligence, they refuse to acknowledge (call it due to manufacturer’s profit interests and salesforce’s quota interest, ignorance and not willing to understand in depth what they sell) that what they are suggesting is counter-productive. Compression must start at the toes. Otherwise, the fluid goes to the place of least resistance, so your toes are like water-soaked logs. Now, with lymphedema in the other leg and in both butt cheeks, I can tell you this is no quality of life. I’ve gotten it three times now in the genital area (once from such an innocent activity as riding a bike; the other from just walking around). Once it shows up in one area, the frequency of it’s recurrence ups itself until you’ve got it permanently there. How do you wrap your genital area? As it is, with both legs wrapped at night, how do you walk or go to the bathroom. This is the kind of solution they have for us? This is deplorable and completely insensitive to us all. I have been fit most of my life, never overweight, never smoked and most anyone I know, even friends, think this is in my head, and that it can’t be as bad as it sounds. The worst part is that they say, “But you look great!” If you don’t feel good, you don’t look good. My lymphedema is visible to the non-medical eye, so it is even further demeaning that people think I’m being vain. If they just lived one 24-hour period with this, they’d take back all the lack of understanding and complacency like “everybody’s got something.” The massage therapists who have recently gotten into this (there’s lots) have done so because they see it as a money bank; they are in with the hospitals to over-charge and under-deliver on new patients who don’t know any better. I know more about lymphedema (and I have it) than they do, yet they in their typical snottiness tell me they’re the experts, yet they can’t even measure. Besides, they always think their measurement is Gods’ word. Oh, they fail to tell you there’s a wait list to get help, so if you’ve got the beginnings of lymphedema, you’re SOL waiting weeks if not months to get treatment. So much for catching it early! Insurance only covers so many sessions, when this is ongoing and forever! Doctors love to push anti-depressants. It too me 4 years to find the right garments, after I just kept pursuing the matter. It also helped that I moved from different San Jose ,CA andSF-area places and then to Seattle, so I’ve tried them all out. All the manufacturers of such ugly stockings do not offer a real solution. You try wearing Elvarex garments at almost $1,500/pair (I kid you not…direct from Northside Hospital in Atlanta, courtesy of folks who can’t measure properly in 95 degree heat with 90% humidity). You cannot properly dress for work; you constantly battle what to put on to camouflage the situation and not worsen the lymphedeam. The hose last at most 3-4 months, as they contain a heavy dose of rubber. Think of your tires rotting, and that’s what around your legs and rear. The inexcusable, pathetic reality and real issue is that for almost a decade since I’ve had lymphedema, I’ve seen no visible improvement in any viable, quality-of-life solution. I’ve offered myself up to partake in clinical studies, but most all the research focuses on breast cancer survivors, further marginalizing us LE folks. I agree with an earlier poster. They will never find a cure for cancer, because there’s too much money to be made on cancer. Likewise, they won’t find a cure for lymphedema, because most are ill-advised by thinking there’s not enough money to be made! If the drug companies wanted to listen, they’d see how much money they could make off of us with a more mobile, dignifying solution. And, no, I don’t take too kindly when someone says “Just deal with it.” That’ easy to say when they’ve got 2 dozen brands of handy-dandy pills to take for their high-blood pressure. Sure, I can deal with popping a pill for something real. I’m no drug advocate, but if the drug companies can make multiple dozens of high blood pressure and anti-depressant pills, they can come up with a pill for lymphedema. I’ve had many ideas myself, but I’ve got no one to fund me as I search for those willing to dig for answers. Sadly, lymphedema has no celebrity face. It’s not hyped enough to make it interesting. Maybe more of those super-disfigured images would waken someone up with the contacts to get to the folks who can decide to make something happen. Omemtum transposition, grafting lymph nodes, lymphatic dialysis, wetsuit technology that uses compression…these are all things I’ve researched (I call it the lymphedema research warpath), yet I don’t have the time and money to make this a full-time job, even though I’d love that chance. I don’t need a support group. I got suckered into one of those, and that had the opposite effect. We need researchers, who if they agree to take a grant under the guise of lymphatic research, don’t tweak it for their own glory and go off and work on something else that looks more promising. Yes, indeed, that happens. Lymphedema affects every moment, waking and asleep. It has been devastating to me, and I am tough. I live life through a lymphedema filter and make many “silent” choices due to what effect this or that event or situation will have on my already heavy, swelling or swollen waist down. The airlines bully me around and are close to getting sued by visibly selecting which health issue is worse. I don’t even complain about the general pain and swampy feeling. In fact, I could deal with the pain, even the occasional sharp, day-long shooting pain that occurs once a month, if only I could get rid of the swelling. The swelling is disfiguring in all aspects. I was never advised that lymphedema was a risk, so I found out the hard way, just going about my normal busy, hard-working day. Cancer didn’t kill me, but lymphedema is doing a good, costly job at it. NLN are academics who seem content to gather yearly to hear each other say the same thing. If you want to know who needs some funding, for they are really trying to get at the heart of the problem through research, it’s the Lymphatic Research Foundation at http://www.lymphaticresearch.org. These folks deserve attention, money and any help you can lend them, for they are doing great things but strapped by economics and lack of awareness. If anyone is interested in really branding this illness, I’d be happy to work with them. Lymphedema needs a stronger, solid and consistent positioning. It needs a call-to-action. No, it should not be left up to the patient to inform him-/herself. Not every patient has the luxury of time to weigh all the odds and go around consulting with physician after physician to find one who’ll operate the way you want them to. Sure, there’s more information out there now than back in 1998 (but not at NLN), but I run across new cancer patients all the time (mostly breast), and if they’ve heard of lymphedema, the seriousness of the disease and high probability (30-40% is high, folks!) that they will get it is just dismissed when I try to alert them of it. Sadly, they do not seem concerned. We don’t need hope; in fact, the few knowledgeable lymphedema experts will tell you matter-of-factly to not have much of that, if any. We need a real quality-of-life solution. Like most severe illnesses, this affects not only the patient but relationships with friends and families. It is about money, and until somebody can make the case for a profitable treatment aided by a national awareness campaign (an A-list celebrity, disgusting, but true, would help, too), there will be no progress, and we’ll still be throwing out hope ever so lightly.
— KarenI think it is important to point out how poorly studied this malady is. While Dr. Howell rightly points to the lack of data, it is not because there are tens of well done studies by which to judge this condition. It is poorly studied and rather than state that there isn’t any data to support a particular view, I think it is more precise to state that there are a limited number of studies by which to draw a firm conclusion.
I do not believe the evidence supports the view that there is a very low percentage of clinically significant lymphedema. I’m sure that any patients with sub-clincial lymphedema were not followed long enough to show whether or not they developed clincially significant lymphedema.
For what it is worth, my surgeon told me that I wouldn’t get lymphedema because I’m thin, regardless of the AND that I had for breast cancer. Which is ridiculous. I was certainly at less risk than an overweight person, but the risk is real, especially for someone as young and active as I am. (I was dx’d at 34, go figure.) Now I have it and it puts a real limitation on the types of things I can do.
— jennifer SaleMy wife was very fortunate that she did NOT experience any of these kinds of problems after she had surgery for breast cancer which removed some lymph nodes. It was in 1992 and none of the doctors who have followed her since then have done any measurements of her arm!
FROM TPP — I would suggest you both study up a bit on lymphedema. Hopefully she does know not to carry heavy bags etc. and be careful about overuse on the affected side. But she should also have a discussion with her doctor because this problem can occur years after surgery. It sounds like she remains in good health which is wonderful news.
— Richard SolomonDr. Howell, The article is available in full HTML. I’ve found that the link on this page does not always work b/c the cookies expire, but if you go to the Cancer homepage, you can find the full article.
I think part of the semantics confusion is the definition of subclinical lymphedema given in the article, which I assumed you had read. The authors define subclinical as a 3-5% volume change that is symptomatic, but is not yet measurable through current clinical methods. By this definition lymphedema is definitely a QOL issue.
— MPFROM TPP — My article is consistent with the published research and defines “subclinical” lymphedema as something that typically would not be detected in a routine exam. I think this semantic debate is typical of this issue and the medical community’s unwillingness to recognize lymphedema as a serious and concerning health problem. To say this is “rare” and something cancer patients typically dont’ need to worry about is simply inaccurate and ignores the data.
Thanks for this posting. The level of ignorance on this subject is astounding, even from doctors. I remember how upset I was when my arm swelled 9 months after breast cancer surgery. My breast cancer survival rate was 85-95%. But this put a whole other twist on it. As someone else wrote, I would have rather been bald.
Luckily the Dr. Vodder method of manual lymph drainage and wrapping keeps it under control, but it’s always a worry. And always an expense as insurance doesn’t pay for the garments that wear out in 6 months.
We need more research and awareness.
— AliceThe posts by the physician who is arguing semantics is typical of the attitude of many physicians toward lymphedema (LE).
I was diagnosed with breast cancer and had a mastectomy and sentinel node removal a few months ago. Since then, my surgeon has said I have a 5% risk of developing LE. I know my risk is lower than if I’d had full node dissection or radiation therapy, but I have a life-long risk of LE nonetheless. Thus, I am constantly fearful of developing poison ivy or getting a bee sting or even lifting a gallon milk bottle with my “at-risk” arm. And, I certainly hope that, if I do develop LE, it would be detected initially in its subclinical form. Isn’t that what we hope with most medical conditions?
The term over which people seem to be arguing here is “subclinical”. The posting doctor’s attitude is that physicians should be focusing on “clinically significant” conditions. By implication, then, physicians should not concern themselves with conditions that are not “clinically signficant” (i.e., subclinical).
He goes on to suggest that, while he considers swelling that affects quality of life to be “clinically significant,” he does not consider “subclinical” swelling (swelling without patient complaint) to be medically or prognostically important.
What the doctor is suggesting is that physicians may ignore objective data (a measured increase in limb diameter) as long as the patient does not complain of discomfort. He bases his argument on lack of data (he doesn’t know if swelling without pain will lead to LE).
I find that attitude appalling. The whole point of the article was to note that the current methods of monitoring for development of LE are inadequate. Here’s a quote: “In the study, 43 women, or 22 percent, developed “subclinical” lymphedema, which means it typically would not be detected in a routine exam.”
Is 22% not a sufficient number of affected people to warrant a change in surveillance methods? The article goes on to say it is at this earliest stage that LE can be controlled most effectively, and its devastating consequences prevented. The doctor, unfortunately, is skeptical of that claim.
I can only say that I am grateful for the conscientiousness of my own breast surgeon, who referred me to a certified LE therapist at a large rehabilitation center despite my low risk of LE. That visit did more to educate me and assuage my concerns about LE and its management than any statistics my physician might have quoted.
Perhaps the doctor who was posting here should invest in some continuing education on LE, rather than depending on a “brief review of literature easily available on the Internet through PubMed.”
— BC SurvivorFROM TPP — Thanks for commenting. The whole point of the study, as you point out, was to see if addressing the problem early, before the swelling has become obvious, will prevent it from becoming a more serious problem. I’ve written about this issue before and there is an odd resistance by the medical community to recognize it as “real.”