Top 5 Things to Know About Cancer and Lymphedema

Hey there Survivor Chest community! My name is Leanna, and I am a 29 year old breast cancer warrior. I’ve been through fertility preservation, chemotherapy, a double mastectomy and reconstruction, endocrine therapy and am currently working my way through targeted therapy infusions. I am also a licensed Physical Therapist, am Board Certified in Orthopedic Physical Therapy, and have been recognized as a Fellow of the American Academy of Orthopedic Physical Therapists. I have been working with breast cancer patients post mastectomy for about 2 years. I had the pleasure of taking over the Survivor Chest Instagram stories back in January 2019, and I got a lot of questions about prevention of cancer related lymphedema and exercising safely with (or without) lymphedema. Lexie was kind of enough to ask me to follow-up my discussion on Instagram with a blog post, so I thought I’d try to provide a bit of info on cancer related lymphedema, what it is, how to lower your risk for developing it, and lifestyle considerations you might think about! 

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 big lifestyle/activity changes. There are physical and occupational therapists that have achieved a special certification for working with patients with lymphedema, and I would highly recommend you seek one out if you are concerned about lymphedema. 

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 (www.lymphnet.org), “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. So with that being said, 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 the at risk 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 fitted by a Certified Lymphedema Therapist.

            -Exercise! Obesity has been noted as a risk factor for development of lymphedema.

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. 

4) How can I learn more about lymphedema?

There is a great website from the National Lymphedema Network, www.lymphnet.org, 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?

If you are looking specifically for a therapist that is a certified lymphedema therapist, there is a therapist directory on the NLN website! Go to the website, and under the “Resources” drop down, you can click on “Therapist Directory”. If you are looking for a PT or OT elsewhere, look for the credentials “CLT-LANA”.

If you are looking for a physical therapist in general, the American Physical Therapy Association (www.apta.org) 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 (www.aaompt.org), 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.

I hope this post has been helpful and maybe started to answer some of your questions regarding cancer related lymphedema!

You can always find me on Instagram @affirmationsfromcancer, and I’m happy to connect with all of you!

Leanna B.Comment