BREAST CANCER,  BREAST CANCER AWARENESS,  COMMUNITY,  LIFE AFTER BREAST CANCER,  MASTECTOMY

Debunking the Myths and Fears of Lymphedema

By: Jenni Rai, PT, CLT

When I initially began working with women who had breast cancer, I was often the first person to mention “lymphedema” to them. This was in 2005, and at the time we Physical Therapists and Certified Lymphedema Therapists (at least the ones I worked with) perceived breast surgeons to find lymphedema insulting. A sort of, “I didn’t screw up! YOU don’t have LYMPHEDEMA!” Despite all of the credible research and acceptance in Europe, lymphedema seemed to be the “red headed step child” of Western Medicine, which unfortunately left patients under informed.

Somewhere during the last 13 years, I’ve noticed a change. More often than not, when I first meet a woman diagnosed with breast cancer, SHE brings up lymphedema. I would like to say this is a good thing, as it indicates there is more education out there about it. However, what I find concerning is the intense fear that accompanies this knowledge.

Let’s be clear, the entire concept of lymphedema sucks. Especially as it typically shows up after breast cancer treatment, which itself is no picnic. Talk about just piling it on! It’s like life’s little rotten cherry on top of an already unwanted, horrendous sundae.

Yes, one more side effect from breast cancer is the last thing anyone wants, but does lymphedema warrant such significant fear?

I’m not sure where this fear comes from. One survivor I asked felt her fear came from googling lymphedema, with the images of swollen, disfigured arms. As a lymphedema expert on several FB groups, I can attest to fear oozing from posts about the subject. Fear spreads like wild fire, so even well meaning posts can accidentally trigger a lymphedemaphobia inferno.

In addition to finding fear on these FB groups, I also come across A TON of misinformation. The sad/frustrating part of this is the misinformation often comes from the DOCTORS, as in “my surgeon said never lift anything heavier than a gallon of milk- ever.” So, in Western Medicine, physicians often specialize in one field, and are then EXPERTS in these fields- oncology is a perfect example. Your surgeon is different from your plastic surgeon, your oncologist from your radiation oncologist, etc. And that’s great! You want the person administering chemotherapy to be an expert in chemotherapy. In fact, there is actual research that shows the greater trust you have in your medical team, the greater your outcome (“People who trust their doctors, 2017”).

Remember the idea of lymphedema as “red headed step child” of Western Medicine? Ok, check out this finding from a research article published in 2011:

“However as it stands, lymphatic function and dysfunction is primarily addressed as a subtopic of the cardiovascular components of preclinical medical curriculum in American schools, and the time devoted to this subject is usually less than 30 minutes.” (Vuong, D. 2011).

30 MINUTES!?!? Insane, right?!

Although I just wrote about how Western Physicians are experts in their fields, this is one field they just can’t plow. They can probably recognize some veggies growing in that field, but let’s not assume much more than that.

In contrast, to become a Certified Lymphedema Therapist (CLT) in the United States you must take AT LEAST 135+ hours of training, then successfully pass an exam.

As a physical therapist, it is considered the biggest Faux Pas to ever say “disregard what your doctor said,” but in regards to lymphedema, let’s say, “take it with a grain of salt,’ then consult with a Certified Lymphedema Therapist.

My goal with this article is to try and remove some of the fear and misinformation surrounding lymphedema with education that will empower you.

Let’s start with a quick overview of the lymphatic system- here’s the down and dirty:

The lymphatic system drains all of the body’s “junk” (think extra fluid, dead cell parts, lactic acid from working out…). This junk eventually ends up with the dirty, used blood in the veins and is filtered with it. To be completely un-eloquent for a moment, think of it as the body’s sewer system. Also helpful to understand is the difference between the lymph vessels and the lymph nodes. To over simply, think of vessels like you would a vein or artery, or, for a non-medical analogy, a freeway. The vessels transport the fluid and are all over the body. The nodes are only in specific spots of the body and are like customs agents along the freeway as you pass from one country to another. They stop the car (fluid) and examine it (any bacteria in there? Anything alarming?) and if there is, they sound an alarm (nodes get bigger and tender, immune system is triggered). You know when we’re sick and we say our “glands are swollen” in our neck? That’s the neck lymph nodes alerting the body to some kind of infection.

Cancer treatment can disrupt this in two major ways: The first is with the removal of lymph nodes. Let’s go back to our freeway travelling to Mexico- if some of the customs agents that are typically open are now gone, the traffic (lymph fluid) can back up. Second, is radiation treatment, which can damage the existing nodes and vessels. With its typical pathway disrupted, fluid can back up, and voila! Lymphedema.

Let’s talk about why this is not ideal. First of all, there’s the aesthetic of two different size arms. HOWEVER now is the time to dispute a possible fear trigger- that gruesomely disfigured arm I mentioned above? Yeah, that’s a stage 3, and DOES NOT HAPPEN OVER NIGHT. In fact, you would have to have some swelling, ignore it for a really long time (think: months, possibly years) for it to become that.

Other reasons we don’t want lymphedema is if not treated, it will only progress and get worse, thickening your skin and making it difficult for you to move that limb. You are at greater risk for developing a skin infection (cellulitis) that if not treated immediately can require IV antibiotics. I really hate to mention this next one because it occurs in < 1% of those with Stage 3, and it involves the “c” word, but developing Stewart-Treves Syndrome (lymphangiosarcoma) has been linked to prolonged, severe lymphedema.

Before I go on with risk reductions, let’s stop for a moment and really hear what lymphedema is. It’s swelling in your arm. It does not even potentially affect your life span, or your fertility. We’ll get into treatment more below, but it does NOT require medication that will make you sick, or make your hair fall out, or burn your skin.

You’ve faced that nightmare, and since you’re reading this, I can assume you got through it. A little arm swelling is NO MATCH for what you’ve been through.

Now take a deep inhale, and then exhale, and thank your body for it’s resiliency.

Ok, back to our story.

Now’s the part where I mention statistics on how likely it is or not to develop lymphedema because I assume most of you are interested in it, but ugh, it’s actually not as helpful as you might think.

According to the National Cancer Institute (NCI), there is no consistency in data about how common it is to develop lymphedema after breast cancer, likely because of the wide variety of differences in diagnosis and treatment (ie, each patient has enough differences that it’s hard to draw accurate conclusions). They go on to say the incidence of arm lymphedema can range from 8% to 56% at two years post surgery(Lymphedema PDQ, 2015). That is a huge, unhelpful margin!

NCI does get a little more specific. For those who have had sentinel lymph node biopsy (usually < 10 nodes removed) the risk for developing lymphedema is 5-17%, and with axillary lymph node dissection (usually 10-40 nodes removed) 20-53% (Lymphedema Risk Factors, 2016). Susan G. Komen has her own statistics: “Most studies show 1 year after breast surgery, fewer than 5 percent of women who had sentinel node biopsy had lymphedema compared to 10-20 percent of those who had axillary dissection” (Lymphedema, 2017). Neither of those studies mention whether or not these women also had radiation, so again, not that helpful.

Let’s move past these useless numbers and get into risk factors for developing lymphedema. We’ve already mentioned radiation, and the amount of lymph nodes removed- those are the two of the four “biggies” (“biggies” is obviously a medical term). The other two are: developing an infection in the arm (or region of breast) and obesity (Lymphedema, 2017).

Since we can’t really control radiation or lymph node dissection, let’s discuss the two we can.

Infection: have you heard “don’t ever get a manicure!!” if you are at risk for lymphedema? That’s because of infection. We’ve all seen that Dateline or 20/20 special where it is revealed just how gross certain nail salons are. Don’t go to that salon. If you do love your manicure, bring your own clean tools, and don’t get your cuticles cut. Cuticles are nature’s barrier and cutting them can potentially provide a little entry way for bacteria to climb on it. If you do get a cut (either manicure related or not), be a little extra conscientious about it (ie, don’t just wipe it on your sleeve and carry on with life). ASAP wash the cut with soap and warm water, then apply a band-aid with some Neosporin type ointment. In general, moisturized skin is happier, healthier skin. Case in point: how easily our skin cracks and bleeds when dried out in winter. Moisturize daily, using something as basic as coconut oil or Eucerin- both of which have anti-bacterial properties. While we’re slathering stuff onto our skin, don’t forget the sunscreen! Bad sunburns have been known to trigger lymphedema.

Obesity: The definition of obesity is a BMI (body mass index) of 30 or greater. Ideal BMI is 18.5 to 24.9 and overweight is considered to be from 25 to 29.9. It’s really easy to calculate it (click here) but as we all know, not as easy to achieve it. Exercise strategies are beyond the scope of this already lengthy article, but in regards to lymphedema, it is OK to lift weights. Just start low and work your way up.

Let’s review. Research has concluded that only FOUR factors are directly linked to increasing your risk for developing lymphedema:

Lymph node removal

Radiation

Infection

Obesity

You may ask yourself, how is that right? What about blood pressure cuffs, injections, blood draws and air travel? Interestingly, an article published in 2016 in the Journal of Clinical Oncology found that those four may NOT be associated with increase in arm size. Of course, that’s just ONE article, which leads this CLT to conclude: Maybe?

To me, the take home message is there are four things we know definitely increase lymphedema risk, and two of them are in our control. I’d start there, with fastidious skin care and work on getting that BMI where it belongs. I would worry less about the other possible “risks.” I’m not saying ignore them completely, but don’t let them take over your life.

Air travel and compression sleeves warrants it’s own paragraph as most people have heard about it. Back in 2005, we were taught as Certified Lymphedema Therapists that ANYONE at risk for developing lymphedema, even if you only had one node removed and no radiation, MUST wear a sleeve on a plane. Physicians often repeat this one (remember, only 30 min!!!). In 2012, the National Lymphedema Network, the organizing body that credentials our certification courses, etc, changed their position as more research had become available (this was even four years before the above article in Journal of Clinical Oncology was published). They revised their recommendation about air travel and compression sleeves to everyone must to only those who have had lymphedema must (Position Paper, 2012). For those at risk, but have not yet developed it, the recommendation became it depends, discuss it with your CLT. When I have this discussion with my patients, we take into account all of their risk factors, as well as their personality. For some women, wearing a sleeve removes stress, so by all means, go for it. For others, it is a reminder of breast cancer, and if their other risk factors are low, I say skip it. Actually, what I most often say is buy one and have it “just in case” you notice some swelling while on vacation, you can put it on, and not worry about it until you get back in town.

Some people follow all of the risk reduction behavior all of the time and still get lymphedema, others look like a walking lymphedema risk and do not develop it. I have a personal story to illustrate the seeming randomness of lymphedema: One of the first patient’s I saw with arm lymphedema had been treated for breast cancer in the 1970’s, at a time when mastectomies and radiation therapy were barbaric compared to today’s methods. She had all of her lymph nodes removed, and by all accounts, should have developed lymphedema. For whatever reason, she never did, until one day she fell and bumped her elbow nearly 30 years after her treatment. I can’t imagine that was the first time in 30 years she bumped her elbow, but why was lymphedema triggered then?

In addition to following/not following the risk reduction practices, there is one more habit I recommend to my patients: compare the size of your arms to one another. Look at the back of your hands, your wrists and your forearms. Get to know what is normal for you so if there is a change in size, you will know right away. If you see a change, schedule a visit to your friendly Certified Lymphedema Therapist! (www.lymphnet.org is a great resource if you need help finding one).

If the swelling is mild, treatment can be as simple as some manual lymph drainage (special massage that helps the lymph fluid find “detours” out of the arm) with a compression sleeve. More advanced lymphedema requires Complete Decongestive Therapy (CDT), which is considered the “gold star” treatment. This is a combination of manual lymph drainage followed by the application of compression bandages to help “squish” the fluid out of the limb. The plus side is, it is extremely effective as a form of treatment, the down side is, it’s a pain in the ass. In an ideal world, treatment would occur daily, with the bandages worn as if in a cast. Treatment can take any where from 6-8 weeks. Once the arm has reduced in size as much as it will (hopefully to the size of the other limb, but this depends on the severity) it becomes necessary to wear a compression sleeve daily.

If the above information wasn’t enough, I have one more analogy to hopefully reframe the way we look at lymphedema. Let’s talk about back pain the way some people discuss lymphedema: “I can’t lift that suitcase! My doctor said I might get…BACK PAIN! Once you get it, it’s chronic! I will need injections and surgery to correct it and even then it will require laborious, daily care!” Truthfully, that is a possibility, yet we don’t let it shape the way we live our life. I’m hoping that the above article has provided you enough information to think of lymphedema more like back pain.

“Jenni Rai, PT, CLT is founder of #OurTribe, an online community helping navigate the transition from breast cancer survivor, to thriver. For more info, check out www.hashtagourtribe.com

References:

People who trust their doctors tend to feel better. (2017, March 9). Retrieved from: https://www.unibas.ch/en/News-Events/News/Uni-Research/People-who-trust-their-doctor-tend-to-feel-better-.html

Vuong, D. Nguyen, M. Piller, N. (2011). Medical education: a deficiency or a disgrace [journal]. Retrieved from http://www.journaloflymphoedema.com/media/journals/_/1108/files/jol6-1-44-9.pdf

Lymphedema (PDQ)- Health Professional Version. (2015, July 17). Retrieved from: https://www.cancer.gov/about-cancer/treatment/side-effects/lymphedema/lymphedema-hp-pdq#link/_20_toc

Lymphedema Risk Factors. (2016, November 25). Retrieved from: http://www.breastcancer.org/treatment/lymphedema/risk_factors

Lymphedema.(2017, March 28). Retrieved from: https://ww5.komen.org/BreastCancer/Lymphedema.html

Position Paper: Summary of Lymphedema Risk Reduction Practices- Summary. (2012). Retrieved from: https://www.lymphnet.org/resources/position-paper-summary-of-lymphedema-risk-reduction-practices-summary

What are your thoughts?

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