Amanda Wilde (Host): Sometimes a side effect of breast cancer treatment is lymphedema. Today we'll talk about what lymphedema is and how to address it with Occupational Therapist Ashley Railsback. Welcome to WakeMed Voices, a podcast brought to you by WakeMed Health and Hospitals in Raleigh, North Carolina. I'm Amanda Wilde.

Ashley, thank you for being here to explain lymphedema. It's an unsettling word, so let's start there.

Ashley Railsback, OTR/L, CLT-LANA: Yeah, thank you, Amanda. I appreciate, the conversation we'll have.

Host: What is lymphedema?

Ashley Railsback, OTR/L, CLT-LANA: So, lymphedema can happen anywhere in your body. I think first we talk about what is the lymphatic system. It is a system very closely related to your circulatory system, only it's a one way system. Basically, it takes excess and eliminates it from your body.

So when there's a dysfunction, like a lymph node is removed or soft tissue is damaged from treatment, it can cause a backup of that fluid. So in this case, this would be a backup of fluid in your arm on the treatment side.

Host: And a backup of fluid will mean pressure and swelling?

Ashley Railsback, OTR/L, CLT-LANA: Yes, exactly. Pressure, swelling, and achiness, not being able to wear your rings or clothing well, those are all symptoms.

Host: And who's at risk for developing breast cancer related lymphedema?

Ashley Railsback, OTR/L, CLT-LANA: So, anyone that has gone through breast cancer treatment and where there is a lymph node removed and or chemotherapy and or radiation therapy. Could be a beautiful combination of all of those things does leave you at risk for developing breast cancer related lymphedema. Now, that does not mean you will develop breast cancer related lymphedema But your risk is higher.

Host: And before treatment or even during, is there anything we can do to reduce our risk of lymphedema?

Ashley Railsback, OTR/L, CLT-LANA: So yes, there are things that you can do even before surgery, while you're going through treatment and afterwards. We call it risk reduction. So this is where you are wearing a compression sleeve when you're doing heavy work, such as resistance training or lifting heavy boxes and when you're doing any air travel. Other ways to reduce your risk are to avoid needle sticks and blood pressure cuffs on that side, as well as avoiding cuts, scrapes, infections on that arm.

Host: Right, so, the fact is, as you said, you're at risk for lymphedema, it doesn't mean you'll get lymphedema, but it sounds like you can develop it at any time.

Ashley Railsback, OTR/L, CLT-LANA: Yes, once a piece of the engine, so to speak, has been removed, the whole system has to work harder. So some people, their lymphatic system can work harder and they never develop symptoms of lymphedema. Others do; over time, it could be six months later, three years later. I've even seen folks who are 20 years out that develop some breast cancer related lymphedema.

Host: What are the signs or symptoms that people should watch out for in relation to lymphedema?

Ashley Railsback, OTR/L, CLT-LANA: So we really like to educate our patients in identifying any early signs of lymphedema as early as we can so we can start treatment early to yield better outcomes for our patients. So some of those would be an achiness or a heaviness in the arm. Like I said earlier, rings and clothing not fitting quite as well.

We also have technology here at WakeMed, it's called a bioimpedance spectroscopy, which is a really big word for a machine that can detect what we call subclinical lymphedema. And that's actually lymphedema before you and I even notice that there's symptoms.

Host: So there's always this new technology too, that's being developed in all fields of medicine. So that can help us through some of these issues,

Ashley Railsback, OTR/L, CLT-LANA: Yes, and because we have this piece of equipment, we have developed a surveillance program which can follow a patient before treatment, after treatment, and well into survivorship so we can continuously monitor for those early signs of lymphedema and to be able to treat you as early as possible. Sometimes we can even reverse those symptoms of lymphedema. So that it doesn't become a lifelong chronic condition.

Host: Which is, if you look this up, it will say it is a lifelong chronic condition.

Ashley Railsback, OTR/L, CLT-LANA: Yes, Dr. Google will show you some very scary pictures, but again, if you are able to treat it early, that will never happen. And if you do develop lymphedema and it becomes later in stages, you can come see a Certified Lymphedema Therapist or at WakeMed, it's the Occupational Therapist, and we will inform you to best treat this condition lifelong.

Host: So to follow up on that, what can happen if you do not manage lymphedema properly? Let's say you ignore the signs and symptoms.

Ashley Railsback, OTR/L, CLT-LANA: That's another really good question. So if lymphedema progresses into the later stages, folks are at risk for infection, chronic hospitalizations, needing, unfortunately, very expensive equipment to best manage the lymphedema long term. And, like we said, lifelong. So, from now until forever.

Host: Right. Now, for people for whom lymphedema is chronic, what are some of the impacts that lymphedema can have just in terms of overall quality of life.

Ashley Railsback, OTR/L, CLT-LANA: We often think of the physical impairments that can come, the heaviness of the limb, not being able to use your arm like you did before, decreased range of motion, decreased strength, but often what I talk to my patients about is the quality of life impairment that it takes. The psychosocial impact of always having to explain, no, I didn't break my arm, I have to wear this compression for my swelling condition; frequently having to worry about infections, different things like that. And so it does become quite a burden both mentally and physically.

Host: So again, you are talking about early treatment and what are those treatment options for breast cancer related lymphedema? Is it the same for everyone or, is it individualized?

Ashley Railsback, OTR/L, CLT-LANA: So we do like to tailor each plan of care for the specific person. I think ideally we are seeing you right after you have either your surgery or a little bit of time right after radiation. So we can work with your soft tissue to allow lymphatic flow to flow a little bit easier to decrease your risk of lymphedema.

Host: Uh huh. So that's important after surgery.

Ashley Railsback, OTR/L, CLT-LANA: Absolutely, yes. The manual work, the increasing your range of motion, not only from a lymphedema perspective, but from a functional perspective. We want to get you back to where you were before you had surgery, right? Get you back to your life.

 Other early treatment is a technique that we use called manual lymphatic drainage, which sounds scarier than it is. It's actually more like a full body massage for your lymphatic system, as well as compression garments.

Host: Yeah, that full body massage just needs a nicer name.

Ashley Railsback, OTR/L, CLT-LANA: It really does. So I usually just say lymphatic massage.

Host: Exactly, which is what it is. Are these treatments outpatient? Are they in your office? Are they at home? Where do they happen?

Ashley Railsback, OTR/L, CLT-LANA: So here at WakeMed, we have an outpatient clinic where folks will come into our clinic for treatment. And then we also have Lymphedema Therapists that are, you know, out in the field if you will, who are doing home visits as well.

Host: Oh, perfect. How do people find a Lymphedema Therapist?

Ashley Railsback, OTR/L, CLT-LANA: So typically it will come from a referral. So a referral from your physician. And when we're talking about breast cancer related lymphedema, it likely comes from your surgeon, your oncologist, your radiation oncologist, someone in that team.

Host: So what I have learned from this is the word lymphedema is not as scary when you think about treatments that are constantly being improved to spot it and treat it. If you get that support after surgery, if you do get it, treat it early, keep monitoring, and do those risk reducing measures as well. It actually sounds like a pretty hopeful picture that lymphedema will be going down in the future. Is that how you see it?

Ashley Railsback, OTR/L, CLT-LANA: Absolutely. And I'll also say that part of our team here are the surgeons, right? Their techniques have improved immensely from when they were performing lymph node removals 20, 25 years ago. So the instance of lymphedema has gone down significantly because of surgical procedures advancing. And then those that do develop lymphedema, you know, if we have eyes on you early on your outcomes are so much better.

But I do want to make the point that just because you are having breast cancer surgery, just because you're having lymph nodes removed, does not mean you will develop lymphedema.

Host: Not at all. In fact, I think statistics show that most people will not develop lymphedema as a result of breast cancer surgery.

Ashley Railsback, OTR/L, CLT-LANA: I think that's a fair statement, yes.

Host: Well, thank you for these key points and for demystifying a bit what lymphedema is and all about and how we deal with it and that empowers us all to face it in whatever ways we need to.

Ashley Railsback, OTR/L, CLT-LANA: Yeah, absolutely. Amanda, thanks so much for having me.

Host: That was Occupational Therapist Ashley Railsback. To learn more about WakeMed Cancer Rehab, visit wakemed.org. If you found this podcast helpful, please share it on your social channels and be sure to check out the entire podcast library for topics of interest to you. I'm Amanda Wilde with WakeMed Voices brought to you by WakeMed Health and Hospitals in Raleigh, North Carolina.