Lymphedema: A Research Study Overview

I’m cancer free, but very anxious about lymphedema. It’s become a bit of an obsession, so, for anyone googling it, here are all the studies that I really should have researched before consenting to the Axilliary Lymph Node Dissection (ALND) surgery that half my doctors told me I didn’t need, and the other half convinced me I should have had done months ago. In all that back-and-forth discussion, nobody gave me the harsh facts about lymphedema. They were all too focused on the cancer, so much so, that I really wasn’t able to give informed consent based on their cheery consolations: “We don’t see that so much; I wouldn’t worry about it.” The risk is small, but it’s about as small as having cancer in my lymph nodes to begin with (somewhere between 15–30%). And the potential effect on my life is enormous. As far as I can tell, I basically agreed to risk being permanently disabled in order to have peace of mind that my cancer won’t spread. Writing about it at least will briefly keep me from insanely measuring the circumference of my arms over and over.

My surgeon has taken a very Epicurean approach. He’s quite convinced that there’s no rhyme or reason as to why some people get it, so I should just live my life, without a compression garment, and not worry about it unless it becomes a problem. I asked about booking a kayaking trip eight-weeks post surgery, and he gave me his blessing. However, while it’s true that there are risk factors beyond my control, there are also some things I can do to prevent this condition — things that patients should be told to do to decrease the risk. I believe he’s negligent in not sharing the latest research. All of these doctors were. It shouldn’t be up to patients to seek out studies to determine how to proceed. That’s why they get the big bucks!!

The information I was given, one pamphlet that came in the mail a month after surgery (last Friday), instructs me to keep my arm protected from dry skin, bug bites, burns, and scratches by wearing gloves and sleeves and lotions to do pretty much anything, and to go to the hospital at any sign of infection. This is forever. My life will never be the same even if I never see any signs of swelling. The pamphlet doesn’t say as much, but there’s a lifelong risk that any infection in that arm or hand could be deadly. There’s nothing about preventionof lymphedema, just about coping with it.

Even weirder, is the Ontario Lymphedema website where it suggests it can be cured by drinking a lot of all natural fruit juice and water, eating well (more green, less junk), and exercising.

“If you can do all these five things on a regular basis, you will have a better chance to cure Lymphedema. There is no harm in seeking for treatment [sic], but you have to make sure that it will be a lifestyle practice for you.”

Every single scientific study I’ve found is very clear that it’s not curable, so I’m not sure who’s running that website (with some questionable images too — is that person’s butt an example of lymphedema?).

But elsewhere, in more scholarly sources, it warns (and some nurses have said as much) not to carry even a small purse on that shoulder ever again, or to go into a hot tub or sauna or anywhere really warm — like in the sunshine, or to immerse my arm in water in a warm bath — all as a means of prevention. This great factsheet (that I’d hand out if I were a surgeon) includes these factors and more on a list of ways to prevent problems after surgery, then suggests,

“Women who have had axillary nodes removed or radiated must cautiously try the activities that are most important to them and ascertain whether or not their body will react with lymphedema. When it is possible to avoid taxing the lymph system, doctors would advise it. For activities that are unavoidable, women can wear a compression sleeve and/or have the arm wrapped with an elastic, bandage-like wrap.”

I guess it’s different for everyone, but for me, I like to know there’s something I can do to try to prevent problems, and this advise, to try things cautiously and well-prepared helps.

By contrast, my surgeon was very clear that I should continue to bike and go backwood camping and canoeing, to just live my life without thinking about it. But how do I carry a backpack or hoist a canoe on my shoulders? I can’t carry either on just one shoulder. And what about the blisters I get on my hands at the beginning of every season. I can wear gloves to do everything (even dishes, as recommended), but, to completely prevent blistering, I feel like I have to completely avoid paddling. What about a tree branch scratching me as I walk through a path? And how will I ever build my dream cottage if I’m only one-handed and have to stay out of the sun? I spend significant time getting bruised and cut and bitten by bugs far from a hospital. I can’t seem to consolidate my surgeon’s lackadaisical attitude with the pamphlet of warnings.

This study (2000) clarifies the disabling effects of the condition and hits the nail on the head with my experience.

Lymphedema is a common and troublesome problem: The cosmetic deformity cannot be disguised with normal clothing; physical discomfort and upper extremity disability are associated with enlargement and recurrent episodes of cellulitis, and lymphangitis may be expected in this setting. In addition to these physical symptoms, patients may experience distress caused unintentionally by clinicians whose primary focus is cancer recurrence and who may therefore trivialize lymphedema because of its nonlethal nature.


Another study (2010) made a similar comment:

“Finally, survivors report frustration with getting health professionals to refer them to someone with appropriate training and expertise to diagnose lymphedema. It is a commonly reported patient experience that surgeons downplay as “normal” a level of arm swelling and symptoms that could benefit from lymphedema treatment. This can be quite frustrating, given that earlier diagnosis may improve long term prognosis and delay progression of this incurable chronic condition. Though lymphedema generally won’t cause death, minimizing or trivializing the issue is frustrating to survivors, who live with the condition day to day, including multiple physical and psychosocial morbidities and the time consuming and expensive activities required for management and preventing progression.”

So, it’s a known problem in the medical community that surgeons downplay the risks, a problem raised maybe every ten years, yet it seems nothing is being done to change this.

Part of the issue with my doctors is that the strongest connection with a risk and presentation seems to be body weight. Maintaining a weight between clinically determined ‘normal’ range can reduce rates by half. In one study, overweight patients developed lymphedema at rates of 49% in 5 years compared to 28% in normal range patients. My first surgeon wrote off any concerns with lymphedema because I’m relatively thin. But 28% is nothing to write off! This is a condition that can lead to amputation of the arm, so it’s absolutely bizarre that it was so flippantly discounted.

That same study says there isn’t clear evidence that blood draws and blood pressure checks increase risk, but that’s my current surgeon’s only concern. Just don’t do those two things… um…that have no empirical evidence of causing a risk. Okay. Furthermore, current studies on the effects of heat show it helps more than it harms, as does a slow progression of exercise. But weight-bearing exercises (or just carrying things) can cause problems if they’re not built up gradually. Then wouldn’t it be unadvisable to go on a backwoods trip at this point??

That study has a handy chart of the facts and fictions so far (In the chart, a level 1 study is the most empirically sound on a 1–5 rating — 5 being largely anecdotal). It suggests that all we know for sure is that body weight has a significant effect on whether or not someone gets lymphedema; needle pricks aren’t necessarily an issue.

But this study found that, on top of body weight, skin pricks definitely contribute to the risk.

One study found that early physiotherapy can reduce the risk from 25% to 7% in the first year after ALND, but the study doesn’t clarify what “early” means. I’m hoping one month in is early enough! Now I just have to find a physiotherapist specifically knowledgeable on the area, but so far, in my calls to places on the GRH Side Effects list, I’ve had no luck.

This study links “psychological morbidity” (mental health issues) to the onset of lymphedema. I can see why. It’s frightening to find out you had a surgery — particularly if there was significant concern raised that it was unnecessary — only to find out it can cause significant lifelong disability. No more biking, canoeing, or building — my three favourite things. That’s a bitch. And it’s unacceptable to be fully aware of the real risk factors only AFTER surgery and only born out by my own drive to learn more.

I’m in a lower risk category because of my weight, but multiple surgeries increases the risk. The BreastCare nurse told me having cording and a hematoma also increase the risk, and she’s pretty sure I already have lymphedema because my arm is tingly and numb, but I can only find evidence that a seroma increases risk, not a hematoma or cording. And some suggest it can’t be diagnosed separately from regular surgical swelling for three monthsafter surgery. This study found a strong correlation with these specific factors:

“advanced disease stage at diagnosis (especially lymph node), obesity, prolonged presence of seroma and delayed wound healing, wound infection, and cellulitis of the operated arm”

I think I had delayed wound healing (I’m not sure what’s considered normal), but none of the other factors. So this study helps me believe the odds are in my favour at least. But yet another factor discussed earlier in that study, and in many others, has to do with the number of lymph nodes removed.

Many places say having a greater number of lymph nodes removed increase chances, but I wonder if it means a greater percentage. I had nine removed, but my surgeon suggested that how they count lymph nodes differs depending on how closely they dissect the nodes. Since there was unlikely to be cancer in my nodes, they likely didn’t dissect as minutely as otherwise, so they might have counted fewer nodes. But does it matter since they took them ALL? From what I understand of it, it makes a difference, not that they only took nine, but that I have zero left. Doesn’t that sound right?? Either way axilliary node dissection patients (like me) are four times as likely to get lymphedema than patients just losing some of the nodes — at 20–53% according to that study. I can’t find any evidence that the number of nodes actually matter.

So, what’s done is done. But now I can’t seem to find, by googling, a lymphedema care specialist or lymphedema arm sleeves — both of which I’m supposed to have immediately according to the studies and the BreastCare nurse, but not according to my surgeon. [ETA — I just found this Ontario site with people trained in Complete Decongestive Physiotherapy!] Onset can start from a few weeks to thirty years after surgery, but 80% who get lymphedema, have symptoms in the first three years. I feel like I’ll be compulsively measuring my arm girth regularly for the next three years (of course, unless I already have it).

But I’ll only really feel better if I can, at the very least, prevent other people going through the same decision making process as ignorantly (and trustingly) as I did.

ETA: My son put out feelers on facebook, and I got lots of good advice, starting with getting a sleeve on Amazon by searching ‘Medical Compression Sleeve’. I don’t know why that didn’t occur to me, but now I’ve got one on the way! Then I also caught wind of Nu Me Boutique, where they actually measure the arm for a sleeve that fits. Wish I had known a day earlier, but the online one was only $20. Some info came from a physician who’s quite sure my surgeon will have told me all this, except he hasn’t. A big issue with this condition is getting the fitness regimen correct — not doing too much or too little in the early weeks — and there’s a place that does just that right in my city! Now I just have to see my family doctor to get a referral to see my oncologist to get her to fill in a form so I can get in there, so likely by Christmas, which I was able to do over the phone!! Of course a few 30k bike trips I took in the last week likely was a really bad idea. Who knew?!? CarePath sent me a link to an article that suggests early intervention is vital, except it’s another week before I see the surgeon again who might be willing and able to make a referral to a specialist. And he’ll likely leave it to his office staff who didn’t have much luck hooking me up with the Breast Care Co-ordinator. At what point is any of this considered malpractice??

And then I was shown a Pathways magazine out of the Canadian Lymphedema Framework, which has a huge amount of information. I went to a Swelling Solutions clinic nearby, and the RMT there confirmed that I have lymphedema. Yup. So now I do little massaging exercises to create new lymph pathways, which all seems a little weird to me. The only studies I could find on the effectiveness are inconclusive, call for further research, and then add,

…groups of experts have highlighted the lack of interest in researching the impact of the physical and psychosocial difficulties of these patients and their quality of life.

Lovely. It’s amazing that a facebook post could garner such useful results. But it’s a sad state of affairs that I couldn’t get any of this information from the surgeons and other medical staff treating me.

ETA even more for more links:
Lymphatic Education and Research Network (LE&RN) with videos about Kathy Bates, who has lymphedema.

A Better Way of Living with Lymphedema by Susan C. Stewart, M.D.

Here’s a good video of how to start self-massage from the Toronto Physiotherapy Centre.

Here’s a great pamphlet with exercises from the London Health Sciences Centre.



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