Prevention as an Ounce of Cure

Here's an update on what I've learned about lymphedema after an ALND. It's way less scary now that I know how to manage it, but it's still a drag. It takes about an hour away from me every day. I'm just in the earliest stages, and it possible to stay here forever, but not without a bit of effort - something breast cancer surgeons should make sure patients understand. It's all about retraining the lymph flow to take a different path through the body. Lymph nodes collect and clean out toxins (infection, etc.) from segments of the body. The body's divided into 'watersheds' which all get sucked to the closest lymph nodes, but, with some missing, some areas have to be redirected. Here's what's working for me right now, and what I wished I had known straight out of the hospital - just ten things!:


Daily prevention and maintenance...
1. Twenty minutes a day of self-massage gets the system working especially mixed with some deep breathing. I do this when I first wake up and directly following any exercise or significant movement. Here's another great video of doing the self-massage.
2. Stretch out the arm for a good ten minutes daily. I was doing about a minute, which isn't enough.
3. Exercise: stretching, tai chi-like exercises, and rebounding (jumping on a mini trampoline) 10 minutes/day and specific neck and arm routines (Joachim Zuther is the best!) can help motivate the lymphatic system, and swimming is great because the limb is surrounded by water pressure. Weight lifting is encouraged, but work up gradually (unless you have a trip planned).
4. Maintain weight through portion control. Excess weight is the number one factor in getting to higher stages of lymphedema.
5. Leukotape K / Kinesiology Tape on the areas likely to swell helps - running from the swelling to just outside the watershed area - worn four days on and one day off. I make the days ending with 0 and 5 my off days. See how to use it here. All products (in Canada) are eligible for funding of 75% off, so get that form from your doctor right away. You need a new form every two years.
6. A compression sleeve and gauntlet can be worn just during exercise and during and after air travel, unless a major flare up occurs (significant swelling over 2 cm). Wash it daily and buy a new one every 4-6 months (so get that form!).
7. Stay hydrated: drink more water and eat less salt. (Reduce alcohol and drink lots of water with it.)
8. Stay well moisturized so skin doesn't crack. Wear gloves for dishes so hands don't dry out.
9. Avoid any skin punctures: cuts, burns, hangnails, splinters, blisters, scratches, needles, pin pricks, or bug bites. Wear gloves for gardening, cycling, DIY construction, and in the kitchen. If you do get a cut, clean it well and cover it with polysporin and a bandaid. And avoid any compression that could restrict the flow of lymph like from blood pressure sleeves, carrying a heavy bag on that shoulder, tight clothes, or even deep massage.
10. Elevate the area for a good hour or so each day. I try to go to sleep with my arm propped up on pillows and just hope I stay that way for long enough before rolling over.

Something else I advise BEFORE getting any treatment is to measure both arms, and then start measuring weekly afterwards to monitor any change before it creeps up on you - six points: hand, wrist, 5cm down from the elbow crease, elbow, 5cm up from the elbow crease, and armpit. OR you can skip the measuring tape and just make your own volumeter. I didn't measure before, and the fact that my left bicep is a bit bigger than my right has everyone convinced I'm swelling up despite the fact that I carry everything heavy in my left arm to leave my dominant hand free for fine motor work like fitting a key in my front door. I really wished I had prior measurements to reassure my medical team.

Then keep an eye out for...
* Inflammation or any swelling requires extra drainage attention to direct it to the right path.
* A flare up (significant swelling) requires an OT treatment and training in bandaging until swelling reduces enough for a sleeve. A sleeve is then necessary during most waking hours or at least 12 hours each day.
* Any sign of infection requires immediate antibiotics. If you're travelling, get a prescription filled before leaving just in case.

Boho Spirit from Juzo

But it's all a bit of a crap shoot:

Even though cancer treatment is the number one cause of lymphedema in Canada, my doctors were flippant about it and dismissed my concerns. My surgeon told me I don't need a compression sleeve at all. My RMT told me I just need a sleeve when I'm very active, but my OT told me to wear the sleeve 16 hours a day, every day. But then she said not to wear the sleeve without a gauntlet because that could trap fluid in my hand, and not to get a gauntlet until she gets that form for me that will get me a government rebate, which can't be done retrospectively, and I can't get the form until I see her again in a month, but still wear the sleeve every day. So, whaaat??? Patients largely self-diagnose this condition, but I was told over phone that I have it based on swelling from a hematoma. I wonder what would have happened without that phone call. I don't think I would have noticed the slight swelling - for better or worse. I'm still stage 0, but I'm hyperaware of every twinge and tingle, which is exhausting.

Without the sleeve, I feel better. It takes the focus off my arm, which takes my mind off it, and I actually forget it a bit and just exist like a regular person. They tell me to listen to my body, and at the end of the day, my body feels better without. I can live with the aesthetics of it, but putting it on is like stuffing a thermarest back into its original packaging. I went to my follow up today with my OT, and the 0.5 cm swelling is down. She said that proves that the sleeve is working,"...even though I know," she added, "that that's not what you want to hear." Then I told her I actually hadn't been wearing it much more than just an hour a day when I work out. So, after a bit of awkwardness, we agreed that's probably enough in my particular case.

I didn't just blindly and petulantly ignore her advice, though. I researched it.

Many studies indicate there can't be a uniform treatment for lymphedema because each patient is very different. But I've been told repeatedly, X is just what we do, even though every health care practitioner I've seen has a plan markedly different from one another. It really becomes up to the patient to decide which piece of advice seems to make the most sense. Some patients go on whichever doctor or nurse they like best, which has the best bedside manner, but I prefer to go straight to the peer-reviewed studies. Here's the long and short of it for those directly affected or otherwise concerned:

Technically, lymphedema swelling has to be more than a 2cm difference at one point between arms to count, and I've yet to have that. But my OT and RMT both assure me (assure me?) that I have lymphedema. And, of course, the sleeve fitter is confident in that diagnosis. It's only my left bicep that's ever bigger than the right. They think of course my right would be bigger because it's my dominant arm, even though I tend to carry everything on my left side, leaving my right free for more dexterous activities like getting a key in the keyhole or writing a note with a pen. One site indicates,

"Some specialists feel that a compression sleeve will compromise the lymphatic system of someone who has had lymph nodes removed but who has never had swelling."

And that really gives me pause to trust the medical community over my own discomfort. Because whenever I wear the sleeve, my arm gets uncomfortable for the rest of the night, enough to take an ice-pack to bed with me. Without it, if I skip many days in a row, I feel just fine. At one point, my OT told me to trust my body, but when I told her how it felt, she countered that since it's still numb in places I don't really know how it should feel, and that I should just wear the sleeve all day. Whaaa....?

Then she told me of a recent McMaster study that shows the importance of compression sleeves. But when I looked into it, I was struck by something I regularly speak to in class - the news headlines was very different than the actual study headline. The news headline was, Compression bandages effective for lymphedema, but the actual study didn't compare treatment with and without compression sleeves; it focused on whether or not manual lymph drainage had any effect. They looked at women with more than 10% difference (at least more than 2 cm) between each arm and compared the effect of compression bandages with massage to a compression sleeve alone. They found that the group getting drainage massage didn't have significantly less swelling. This prompted a rebuttal from Massage Therapy Canada, indicating numerous studies to the contrary, and concluding,

"The sleeve-and-glove approach to lymphedema therapy as a panacea is an outmoded approach that has resulted in distress and inadequately treated lymphedema. But it in no way actually demonstrates that compression sleeves reduce swelling."

The study, titled "Randomized trial of decongestive lymphatic therapy for the treatment of lymphedema in women with breast cancer," suggests that massage might not have as much of an effect as previously thought, but all that could be concluded about compression is that sleeves work as well as bandages on patients with more than 10% difference between arms. It doesn't follow, however, that people with less than 2cm difference would benefit from compression sleeves. At all.

An overview of studies found improvement in lymphedema volume with use of a sleeve, but the studies couldn't be accessed to see if patients were in the latent stage or had been treated for lymphedema (to remove excess swelling) and wore the garments after treatment as seems to be the primarily suggested use. I couldn't find any study that suggests compression garments be worn for patients with less that 2 cm swelling (i.e. preventatively) with the exception, occasionally, of the case of air travel. There just isn't enough research in this area, and it might be difficult to get participants considering it only affects 30% of patients. It would require collecting a random sample of breast cancer survivors, divided into matched pairs (for number of nodes, exercise levels, weight, etc.), with one half of each pair wearing sleeves daily despite no symptoms, and then comparing the rate of lymphedema development somehow divorced from any other possible variables (cuts, air travel, etc.).

I believe that compression sleeves help, but I'm not convinced they are necessary all day in preventative cases. There are some downsides to them that have to be considered. Already I found out that they can't be worn with sunscreen because it affects the fabric, and they don't offer any protection, so a burn is quite possible (as I discovered kayaking). They can bind and rub at the elbow, which can open the skin. And a sleeve without a gauntlet can lead to hand swelling. That's just from my personal experiences in a few short months. But for me, the biggest drawback is the psychological effect of a constant reminder of the condition leading to a bit of an obsession with it all followed by occasional anxiety attacks. Reducing that incidence has got to count for something.

This study suggests similar problems,

"Adverse effects were secondary to poor choice of therapeutic material, excessive pressure or contact dermatitis. For the arms, an elastic garment stopping at the wrist can be responsible for lymphedema of the hand and fingers. Rubbing of sleeve seams may cause pain and even ulcers between the thumb and forefinger."

And Connie Sarvis, wound consultant at Seven Oaks General Hospital, cautions,

"Compression can exacerbate poor skin condition, DVT, heart conditions, inflammation, and cellulitis; it may also increase the risk of infection....Compression garments—such as stockings, sleeves, and gloves—should only be used in maintenance therapy."

When I measure myself, I see no more than a half centimetre difference between the arms at any point. The National Lymphedema Network says,

"As long as your limb size does not change and you have no pain, aching, or sensation of tightness in your arm or hand you may be able to dispense with wearing it. If you are going to be doing heavy work around the house or gardening or exercising you may want to wear the compression sleeve to support your limb. Your muscles will need more oxygen to do the work/exercise so more blood will flow to your muscles in your arm. Greater blood flow to the area means that more fluid will be deposited in your tissues needed to be moved by your lymphatics in that limb. Wearing the compression garment will help increase the pressure on those lymphatics, helping to increase lymph flow out of your arm, hopefully avoiding a return of your lymphedema. Pacing your activity and taking rest breaks frequently can help you to avoid increasing the amount of lymph fluid needing to be moved (lymph load) over the capacity of your lymphatic system to handle the fluid (lymph transport capacity). Lymphedema occurs when the lymph transport capacity is less than the lymph load."

Rutherford's Vascular Surgery suggests,

"The use of prophylactic compression has been endorsed as a preventive strategy for provocative situations that may theoretically trigger an increase in lymph production (e.g., air travel and exercise)....Notably, no empirical data support their use, and poorly fit garments may actually increase patients' risk of lymphedema by applying intense focal pressure and creating a tourniquet effect. Therefore, if a patient's elevated risk of developing lymphedema seems to warrant use of a prophylactic garment, an experienced fitter should determine garment type and size, and compression should not exceed 15 to 20 mm Hg."

I bought my sleeve from a fitter, but it's 20 to 30 mm Hg, and it's a size "small long" even though I believe I have relatively short arms, so there's always an issue of bunching for me.

The main concern seems to be with wearing a sleeve for air travel. OncoLink suggests,

"The current recommendation of the Lymphedema Service at the Abramson Cancer Center of the University of Pennsylvania for patients who are at risk but have NO history of swelling is to wear a Compression Class I sleeve during flights greater than 3 hours....There is some concern that wearing sleeves may interfere with the function of a lymphatic system that has been injured but is adequately handling the fluid load....Some patients actually swell when they don a compression garment. It seems that the added compression interferes with the transport capacity of the lymphatics and tips the system into overload. For this reason, patients who do not have lymphedema but wish to wear a sleeve should only use compression class I garments. Stronger compression will do more harm than good."

This metastudy on preventative measures also concluded, "Avoid air travel and wear compression garments when flying." However, other studies found no difference with air travel, and promoted exercise use further,

"Graham and colleagues surveyed 293 breast cancer survivors about changes in arm circumference and airplane travel (level 3) and found no cases of permanent new onset lymphedema in this cohort. In fact, patients who had taken precautions when flying, such as using compression garments, were actually more likely to develop lymphedema or have progression of their existing lymphedema than those who had not. Similarly, Kilbreath et al prospectively assessed the impact of flying on at risk limbs in breast cancer patients (level 2) by evaluating patients who had flown from Canada to Australia to attend a dragon boat regatta. They found no adverse changes in impedance ratios comparing the normal limb to the at risk limb in 95% of patients when comparing pre and post flight measurements. The authors acknowledged that the subjects in this study had trained for dragon racing and that this exercise may have had a protective effect."

I have no intention of being in a plane any time soon anyway - or ever if I can help it, so wearing a compression sleeve for the hour a day I spend jumping, at WellFit, or cycling will be my route unless further swelling develops (knock wood). Doing the research is interesting to me, but it ended up having no different result than had I just followed the instructions that I wanted to follow in the first place! Maybe I should just trust my body.

And now, Kathy Bates:




ETA: And now there's microsurgery to replace lymph nodes that works about a third of the time.

ETA: One doctor's letter about how outrageous it is that this condition is largely ignored.

ETA: In a new study, 60% of women with secondary lymphedema successfully perform daily self-care at home. Those who don't tend to have low self image, discomfort with their new body, or are an ethnicity other than Swedish (or, maybe more to the point, weren't of the dominant ethnicity of the hospital).

ETA: We're not alone, even though it sure feels like nobody's heard of this before! Kathy Bates writes, "upward of 10 million Americans suffer from lymphedema—more than muscular dystrophy, multiple sclerosis, amyotrophic lateral sclerosis, Parkinson disease, and AIDS combined . . . in 4 years of medical school, students spend, in aggregate, between 15 minutes and half an hour on the lymphatic system; therefore, it is not included on most state licensing examinations. This means if you have a swollen limb or swelling in your groin or neck and go to your doctor, often he or she will not have been educated to properly diagnose your lymphedema."

ETA: Best Practices for the Management of Lymphedema from the Medical Educational Partnership

ETA: Videos on Lymphatic System and Part 2, and some useful Q&A.

ETA: More on new surgical procedures.

ETA: It was featured in Macleans Magazine April 2018

ETA: Here's a five-year study that found 42% of breast cancer surgeries provoked lymphedema, but, of those, more than half never experienced more than mild symptoms, and fewer than 5% of them experienced chronic and severe symptoms.

ETA: Fending off lymphedema - a new study suggests compress and massage early can prevent it.