Lymphedema is abnormal fluid retention and swelling that typically develops in the arms or legs but may occur anywhere in the body, including the trunk, breasts, genitals, face, head and neck. It can also be a potential side effect of cancer treatment.
Thanks to improved surgical techniques, today’s cancer patients are far less likely to develop lymphedema after surgery. Those who are affected by the condition may undertake a whole new set of challenges and can find help at Roswell Park’s Lymphedema Clinic, the only physician-managed lymphedema program in Western New York.
Joining the show to discuss how Roswell Park Comprehensive Cancer Center can assist patients with lymphedema is Monica Hubbert, MOT, OTR/L, CLT. She is an Occupational Therapist at Roswell Park Comprehensive Cancer Center, Buffalo N.Y.
Selected Podcast
Relieving Lymphedema
Featured Speaker:
Monica Hubbert, MOT, OTR/L, CLT
Monica Hubbert is an Occupational Therapist and Certified Lymphedema Therapist at Roswell Park Comprehensive Cancer Center. Previously Monica has worked as an Occupational Therapist in sub-acute rehabilitation, home care rehabilitation, Inpatient rehabilitation, outpatient rehabilitation, and as an adjunct faculty member in an Occupational Therapy Assistant Program. Monica enjoys specializing in the treatment of lymphedema and assisting with individual’s return to their highest quality of life. Monica possesses a Masters of Occupational Therapy from Baker College. Transcription:
Relieving Lymphedema
Bill Klaproth (Host): Lymphedema is abnormal fluid retention and swelling in the body as a result of cancer treatment. Here to talk with us about relieving lymphedema is Monica Hubbert, an Occupational Therapist at Roswell Park Comprehensive Cancer Center. Monica, thank you for your time. Take us through this a bit more. What is lymphedema and why does it occur?
Monica Hubbert (Guest): Sure, lymphedema is an abnormal accumulation of protein-rich edema. It occurs when people have trauma or changes to their lymphatic system. Those changes are part of normal cancer treatment, and what happens is that over time, the fluid – the edema that is supposed to reside ends up sticking around longer. Therefore, it creates an abnormal swelling that can stay present for, unfortunately, a lifetime.
Bill: Oh, wow. All right, and where does it usually occur on the body?
Monica: Yeah, so areas that are at risk are – it’s found in the extremities. It’s found in a person’s trunk. It can be found in the head and neck and also in the genitals.
Bill: So, you say it stays there for life? If you get the – is it like a lump on the skin?
Monica: No, it’s – so the body is divided into these areas that we call watersheds, but if you take a line and trace it right down the middle of your body and then divide it once again at the collarbone and then at the belly button, you have made yourself six sections. Those six sections, which includes your legs and your arm, are the areas that can be at risk depending on where you had damage to your lymphatic system or trauma to your lymphatic system.
Bill: And what are the symptoms of lymphedema?
Monica: Right, so, lymphedema – we heavily depend on sensation in the beginning stages or at that stage one – or stage zero even. We depend on people to report sensations of heaviness, of fullness in their limbs, tightness of clothing or tightness of jewelry. You can also see changes in skin texture and skin color.
Bill: So, this is a swelling then. In my mind, I was thinking like a lump or a bump, but this is a swelling of tissue where your arm is thicker than usual, something like that?
Monica: Correct, yes. It can be not only your arm, but quite often – especially with our individuals who are undergoing breast cancer treatment – it can be found under the armpits, right at or above your collarbone, and underneath your shoulder blade, as well. It can also be seen in the gluteal tissue or the tissue of your buttocks and then in the lower abdomen region, too.
Bill: And Monica, are there active steps a patient can take to lower the risks?
Monica: Yeah, so, in lymphedema, we practice risk reduction. There is no way to prevent lymphedema. We know that if you have trauma two lymphedema, you are at that lifelong risk. The people who are at greatest risk of lymphedema are those people with a BMI greater than 25, people who have undergone or are undergoing radiation therapy, and those who have had lymph nodes, multiple lymph nodes, or the entire lymph node bed removed.
Bill: Does lifestyle modifications help this – exercise, diet, etcetera?
Monica: Yeah, so, a regular, active lifestyle really helps people. We also recommend avoiding things such as blood pressure cuffs, avoiding needle punctures to that area. We want to make sure that people take really, really good care of their skin. You want to keep your at-risk area meticulously clean; you want to apply moisturizers and prevent chapping and chaffing of your skin. You want to make sure you are really watching your nail care -- we don’t want anybody cutting their nails, we want people to push back their cuticles – wearing sunscreen and bug repellent also help eliminate those factors that can aggravate or exacerbate lymphedema symptoms.
Also, beyond skin care, we recommend that you stay in good communication with your doctor and if you have a therapist, we recommend that you stay in good communication with them. Calling or informing them when you have a change in those symptoms – if you’re noticing those sensations of fullness or heaviness – even if you have a swelling that’s coming and going, those are all early signs of lymphedema that we like to know about early.
We also talk about infection control. We know that when people contract cellulitis or they have infection sites at drain sites, they can develop lymphedema at a much higher rate than individuals who do not. We want to avoid limb constriction. We also want to avoid people, especially ladies carrying heavy purses – or even gentlemen carrying heavy bags – on their affected extremities.
Bill: And are there therapies available to relieve lymphedema symptoms?
Monica: There are. You want to make sure that you connect with a certified lymphedema therapist. That person will determine your – what treatment plan is best for you. The gold standard of treatment of lymphedema is what we call Complete Decongestive Therapy. Complete Decongestive Therapy involves two phases. It involves an active phase, which is what you’re going to do – or an acute phase – with your therapist, but then also, because this is a lifelong condition, we want you to do a home management phase. In those phases, they consist of again, skin care – we talk about – there is bandaging or compression garments. We talk about decongestive-specific exercise, and then we also go over manual lymph drainage, which is a manipulation of the skin to help redirect that fluid.
Bill: You said it doesn’t go away, but is there a way to shrink it or management so that it’s not as bad?
Monica: Yeah, so following those steps that we just talked before about in that acute phase, the compression bandaging is one of the most effective ways that we use to reduce and shape a limb. Compression garments are wonderful for containing or maintaining a size, but to really reduce the size of your limb, you need to go through a multi-layer compression bandaging.
Bill: And how long does that take? Is there like an outpatient physical therapy service?
Monica: It is a – you could receive it as an inpatient or outpatient, but typically it is an outpatient service. It is performed by a Certified Lymphedema Therapist. That person could be an Occupational Therapist, or they could be a Physical Therapist – I think even some massage therapists are out there – but the majority of patients receiving outpatient therapy will receive it from an OT or a PT.
Bill: And Monica, tell us about Roswell Park Cancer Institute. How do you assist patients with lymphedema?
Monica: Right. We start at the very beginning. We really want to talk about education, telling people what the signs and symptoms are of lymphedema, not just coming from the lymphedema therapist, but coming from all of our staff members. We want to help people get early referrals so we can do early treatment. We then want to continue to monitor those people. We follow the protocol of taking a look at them at the one-month marker, three-month marker, and sometimes six-months and a year depending on what they demonstrate. If the person does have lymphedema symptoms, we want to get them into treatment here at our clinic. And then, we determine what is their best treatment plan based on what they’re showing us.
We also want to make sure that we follow them throughout. We want to have a good home management program. At Roswell, we’re getting ready to start, in January, a lymphedema home management program that will meet once a month to go over things like the decongestive-specific exercises and other issues that involve the manual lymph drainage, compression garments, skin care, all of those things, but more focused at a home management level.
Bill: Right, well Monica, thank you so much for your time today and talking with us about lymphedema. We appreciate it. For more information, please visit RoswellPark.org, that’s RoswellPark.org. You’re listening to Cancer Talk with Roswell Park Comprehensive Cancer Center. I’m Bill Klaproth. Thanks for listening.
Relieving Lymphedema
Bill Klaproth (Host): Lymphedema is abnormal fluid retention and swelling in the body as a result of cancer treatment. Here to talk with us about relieving lymphedema is Monica Hubbert, an Occupational Therapist at Roswell Park Comprehensive Cancer Center. Monica, thank you for your time. Take us through this a bit more. What is lymphedema and why does it occur?
Monica Hubbert (Guest): Sure, lymphedema is an abnormal accumulation of protein-rich edema. It occurs when people have trauma or changes to their lymphatic system. Those changes are part of normal cancer treatment, and what happens is that over time, the fluid – the edema that is supposed to reside ends up sticking around longer. Therefore, it creates an abnormal swelling that can stay present for, unfortunately, a lifetime.
Bill: Oh, wow. All right, and where does it usually occur on the body?
Monica: Yeah, so areas that are at risk are – it’s found in the extremities. It’s found in a person’s trunk. It can be found in the head and neck and also in the genitals.
Bill: So, you say it stays there for life? If you get the – is it like a lump on the skin?
Monica: No, it’s – so the body is divided into these areas that we call watersheds, but if you take a line and trace it right down the middle of your body and then divide it once again at the collarbone and then at the belly button, you have made yourself six sections. Those six sections, which includes your legs and your arm, are the areas that can be at risk depending on where you had damage to your lymphatic system or trauma to your lymphatic system.
Bill: And what are the symptoms of lymphedema?
Monica: Right, so, lymphedema – we heavily depend on sensation in the beginning stages or at that stage one – or stage zero even. We depend on people to report sensations of heaviness, of fullness in their limbs, tightness of clothing or tightness of jewelry. You can also see changes in skin texture and skin color.
Bill: So, this is a swelling then. In my mind, I was thinking like a lump or a bump, but this is a swelling of tissue where your arm is thicker than usual, something like that?
Monica: Correct, yes. It can be not only your arm, but quite often – especially with our individuals who are undergoing breast cancer treatment – it can be found under the armpits, right at or above your collarbone, and underneath your shoulder blade, as well. It can also be seen in the gluteal tissue or the tissue of your buttocks and then in the lower abdomen region, too.
Bill: And Monica, are there active steps a patient can take to lower the risks?
Monica: Yeah, so, in lymphedema, we practice risk reduction. There is no way to prevent lymphedema. We know that if you have trauma two lymphedema, you are at that lifelong risk. The people who are at greatest risk of lymphedema are those people with a BMI greater than 25, people who have undergone or are undergoing radiation therapy, and those who have had lymph nodes, multiple lymph nodes, or the entire lymph node bed removed.
Bill: Does lifestyle modifications help this – exercise, diet, etcetera?
Monica: Yeah, so, a regular, active lifestyle really helps people. We also recommend avoiding things such as blood pressure cuffs, avoiding needle punctures to that area. We want to make sure that people take really, really good care of their skin. You want to keep your at-risk area meticulously clean; you want to apply moisturizers and prevent chapping and chaffing of your skin. You want to make sure you are really watching your nail care -- we don’t want anybody cutting their nails, we want people to push back their cuticles – wearing sunscreen and bug repellent also help eliminate those factors that can aggravate or exacerbate lymphedema symptoms.
Also, beyond skin care, we recommend that you stay in good communication with your doctor and if you have a therapist, we recommend that you stay in good communication with them. Calling or informing them when you have a change in those symptoms – if you’re noticing those sensations of fullness or heaviness – even if you have a swelling that’s coming and going, those are all early signs of lymphedema that we like to know about early.
We also talk about infection control. We know that when people contract cellulitis or they have infection sites at drain sites, they can develop lymphedema at a much higher rate than individuals who do not. We want to avoid limb constriction. We also want to avoid people, especially ladies carrying heavy purses – or even gentlemen carrying heavy bags – on their affected extremities.
Bill: And are there therapies available to relieve lymphedema symptoms?
Monica: There are. You want to make sure that you connect with a certified lymphedema therapist. That person will determine your – what treatment plan is best for you. The gold standard of treatment of lymphedema is what we call Complete Decongestive Therapy. Complete Decongestive Therapy involves two phases. It involves an active phase, which is what you’re going to do – or an acute phase – with your therapist, but then also, because this is a lifelong condition, we want you to do a home management phase. In those phases, they consist of again, skin care – we talk about – there is bandaging or compression garments. We talk about decongestive-specific exercise, and then we also go over manual lymph drainage, which is a manipulation of the skin to help redirect that fluid.
Bill: You said it doesn’t go away, but is there a way to shrink it or management so that it’s not as bad?
Monica: Yeah, so following those steps that we just talked before about in that acute phase, the compression bandaging is one of the most effective ways that we use to reduce and shape a limb. Compression garments are wonderful for containing or maintaining a size, but to really reduce the size of your limb, you need to go through a multi-layer compression bandaging.
Bill: And how long does that take? Is there like an outpatient physical therapy service?
Monica: It is a – you could receive it as an inpatient or outpatient, but typically it is an outpatient service. It is performed by a Certified Lymphedema Therapist. That person could be an Occupational Therapist, or they could be a Physical Therapist – I think even some massage therapists are out there – but the majority of patients receiving outpatient therapy will receive it from an OT or a PT.
Bill: And Monica, tell us about Roswell Park Cancer Institute. How do you assist patients with lymphedema?
Monica: Right. We start at the very beginning. We really want to talk about education, telling people what the signs and symptoms are of lymphedema, not just coming from the lymphedema therapist, but coming from all of our staff members. We want to help people get early referrals so we can do early treatment. We then want to continue to monitor those people. We follow the protocol of taking a look at them at the one-month marker, three-month marker, and sometimes six-months and a year depending on what they demonstrate. If the person does have lymphedema symptoms, we want to get them into treatment here at our clinic. And then, we determine what is their best treatment plan based on what they’re showing us.
We also want to make sure that we follow them throughout. We want to have a good home management program. At Roswell, we’re getting ready to start, in January, a lymphedema home management program that will meet once a month to go over things like the decongestive-specific exercises and other issues that involve the manual lymph drainage, compression garments, skin care, all of those things, but more focused at a home management level.
Bill: Right, well Monica, thank you so much for your time today and talking with us about lymphedema. We appreciate it. For more information, please visit RoswellPark.org, that’s RoswellPark.org. You’re listening to Cancer Talk with Roswell Park Comprehensive Cancer Center. I’m Bill Klaproth. Thanks for listening.