Top 5 Things to Know About Lymphedema

So this past week I had a really great experience. I spent nine days in a course to become a Certified Lymphedema Therapist (CLT), and successfully completed the course and passed all the tests! Becoming a CLT is not something I ever thought I’d do, but after my own breast cancer journey, I became more interested in it, and when the opportunity arose, I jumped at it. During my career as a Physical Therapist, I’ve mostly focused on building my skills in Orthopedics. I am Board Certified in Orthopedic Physical Therapy, and have been recognized as a Fellow of the American Academy of Orthopedic Physical Therapists. However, I have also been working with breast cancer patients post mastectomy for almost 3 years. So with all that being said, I thought sharing some facts about lymphedema would be a great topic for this week! The post that follows is an offshoot of a blog post I did for Survivor Chest. I’ve updated some info, but if you read that post, you’ll see some similarities!

Before I get started, I should mention that I cannot speak to your specific situation and can only give general thoughts here – you should always always always speak to your medical team about any questions/concerns you have, and before you make any lifestyle/activity changes. If you have specific questions about your risk for lymphedema or managing lymphedema, let me know, and I am happy to help you find a CLT near you.

An example of bandaging for arm lymphedema – my partner did a great job!

Now, without further ado…

Top 5 things to know about lymphedema:
1) What is lymphedema and how does it develop?

From the National Lymphedema Network (NLN) website, “Lymphedema is an abnormal collection of lymphatic fluid in the tissues just beneath the skin…Lymphedema develops when a body region, where lymphatic vessels and lymph nodes are missing or impaired, becomes overloaded with lymphatic fluid.”

Lymphedema can be primary or secondary – lymphedema related to cancer treatment is considered secondary lymphedema because there is a clear damage/trauma to the lymphatic system that led to development of the lymphedema. Typically damage to the lymphatic system comes in the form of lymph node removal during surgery (like a sentinel node biopsy or axillary node dissection), or from radiation therapy.

2) Is there anything I can do to prevent cancer related lymphedema from developing?

This is a bit of a tricky question… once you’ve had damage/trauma to the lymphatic system, you are always considered at risk for developing lymphedema. Those of us that had lymph nodes removed during surgery but haven’t yet developed any swelling are considered to be in a “latency stage” or Stage 0. Basically what this means is that we know our lymphatic systems are functioning at a reduced capacity, and the potential for our systems to be overloaded with fluid is greater.

There are things we can do to reduce our risk, but not fully prevent this condition. That being said, not everyone develops lymphedema, and researchers are still figuring out best recommendations and identifying those most at risk. Here’s a few things to consider:

  • Avoid trauma to the side at risk: for example, if you had lymph nodes removed from your right armpit, you will want to try and avoid any cuts/scrapes to that side. Wear gloves when you garden, don’t wear excessively tight clothing/jewelry on that side, etc.
  • Try to avoid injections, blood draws, and blood pressure on the side at risk: there is some debate about whether or not these things are enough to trigger a lymphedema onset, but for now they continue to be part of the general recommendations.
  • Try to avoid extreme temperatures: avoid prolonged time in saunas/hot tubs, and make sure you are dressed appropriately for cold temperatures.
  • Consider asking your medical team if you should wear a compression sleeve for air travel: your physician may have already brought this up, and different physicians will have different preferences based on your individual level of risk, but it never hurts to ask! If a sleeve is recommended – make sure you are evaluated by a Certified Lymphedema Therapist, they can make recommendations on what type of garment to get, and where to get fitted for one (sometimes they can fit you themselves).
  • Exercise! Obesity has been noted as a risk factor for development of lymphedema. Exercise also helps facilitate muscle pump action, which can help with moving fluid in our bodies.

3) Exercise? But how can I do that safely? How can I do that without triggering lymphedema?

The most important thing is that you are properly trained on whatever type of exercise you choose to pursue, and that you are cleared by your medical team to perform the exercise. Most of the research we have on lymphedema and exercise is related to patients with breast cancer related lymphedema – so recommendations may not always apply to other kinds of lymphedema. The type of exercise will vary from person to person, and will depend on your individual health status, as well as what your medical team recommends/allows. Generally resistance exercise (with weights), aerobic exercise (think cardio), and stretching have all been shown to be safe for patients at risk for breast cancer related lymphedema. I recommend that all my patients stay as active as they can during treatment – exercise has so many benefits for our bodies and our minds! During my treatment, I tried to go on walks (even on the really bad chemo days, my husband would help me walk around the block), go to the gym, or go rowing (I joined a rowing team in Chicago for breast cancer patients). The point is – you just have to find something that works for you, and be consistent with it. Some physicians or therapists will recommend that you wear a compression garment during more vigorous activities.
If you undergoing active treatment for lymphedema, your therapist will give you guidelines on what you should and should not be doing.

4) How can I learn more about lymphedema?

There is a great website from the National Lymphedema Network, and you can click around to learn about everything lymphedema related. I particularly recommend going to the “Knowledge” drop down menu, and clicking, “Position Papers”. All the info I discussed above (and more!) is in the position papers. You can read in more detail about risk reduction, exercise, air travel, etc.

5) How can I find a good physical therapist or a PT who is also a certified lymphedema therapist (CLT)?
If you are looking specifically for a therapist that is a certified lymphedema therapist, there is a therapist directory on the Lymphology Association of North America (LANA) website. If you are looking for a PT or OT elsewhere, look for the credentials “CLT” or “CLT-LANA”.

If you are looking for a physical therapist in general, the American Physical Therapy Association has a “Find a PT” button at the top of the website, and you can search by location and then by therapist specialty (there is a Cancer specialty option).

I would also recommend looking at the American Academy of Orthopedic Manual Physical Therapists website, and using their “Find a Fellow” feature (under the Public Resources drop down menu). Therapists with the FAAOMPT designation have advanced training in manual therapy (i.e. hands on techniques) and clinical reasoning, though may not always have experience with a cancer population.

Me and my amazing instructor at the end of the CLT course.

I hope this post has been helpful and maybe started to answer some of your questions regarding cancer related lymphedema! I personally have not had issues with swelling, but now that I’ve been through the CLT course, I am considering getting a compression sleeve to wear during my more high intensity workouts.  Are any of you dealing with lymphedema? What has your medical team told you about lymphedema? I’d love to connect and hear your thoughts/concerns!

4 thoughts on “Top 5 Things to Know About Lymphedema

  1. I have secondary lymphedema stage 2. I put off getting assessed because I felt like I was bothering the PA. She didn’t think I had it. I wear a compression sleeve from the time I wake up until about one hour or one and a half hours before bed. I use a compression pump for one hour before bed. I am waiting to see if I get approval on my night compression sleeve.

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  2. Hi, I have secondary LE following an axilla clearance and breast cancer. I am an OT and really want to know apart from my night and day sleeve, how I can push the envelope with exercise and weights, what compression wrap should I go for?

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    1. Hi there! Thanks for reading and sharing your experience – it’s always nice to meet another rehab professional that is also a survivor! Because I haven’t personally evaluated you I can’t make any really specific recommendations. If you have a sleeve that you wear during the day, the general recommendation from the National Lymphedema Network is that you also wear it during heavy exercise. Is there a specific type of exercise you’d like to be doing? There are so many good options out there – you just need to make sure you are properly trained and pay attention to how you feel. Hope this helps!

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