Living with Lymphedema, with Judith Nudelman, MD

March 5, 2015
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Today’s podcast is about living with lymphedema, a build-up of fluid that may occur after cancer treatment. This podcast will be led by Dr. Judith Nudelman, a family physician and certified lymphedema therapist. 

Transcript: 

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ASCO: You're listening to a podcast from Lineagotica. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors that care for people with cancer.

Today's podcast is about living with lymphedema, a buildup of fluid that may occur after cancer treatment. This podcast will be led by Dr. Judith Nudelman, a family physician and certified lymphedema therapist. Dr. Nudelman's interest in lymphedema began when she developed breast cancer related lymphedema and discovered a lack of awareness of this common long term side effect. ASCO would like to thank Dr. Nudelman for discussing this topic.

Dr. Nudelman: I'm Dr. Judith Nudelman. I'm a family physician. I'm also a patient with breast cancer related lymphedema, and I'm talking about it today because despite the fact that I'd been in practice for over 20 years, I really didn't know anything about lymphedema when I developed it myself, although I had a sense that I was at slightly higher risk. I did develop lymphedema very shortly after my initial surgery for breast cancer, and I had sought treatment, and that was actually under the care of two lymphedema therapists while I developed it. And yet I found that I really didn't know anything about lymphedema, and I really didn't understand the treatment or how to get the treatment that I needed. I actually found my support and guidance in an online forum where some women really devoted themselves to helping other women going through this. And ultimately we did create a website called stepupspeakout.org, which is basically an evidence-based website to help patients with lymphedema. Lymphedema can be secondary, which is that you're not born with it, or it can be primary, that you're born with it. But there's actually an overlap where there have been studies that show that some of us who get lymphedema so easily probably have a genetic predisposition to get it.

So what is lymphedema? Lymphedema is damage to the lymphatic system, which we all know about lymph nodes, but there are actually vessels that collect the lymphatic fluid which is a protein fluid, which also helps the immune system. It's really difficult to see it in real life other than the lymph nodes. And the lymphatic system kind of sits there quietly, but when it's damaged, it actually can cause swelling which we know about. That's the obvious problem that one can see, but it's actually a damaged immune system. It doesn't function well. You're predisposed to bad infections. So lymphedema can be as subtle as just some excess fluid in the tissues, but that's actually not a benign problem because when the fluid sits in the tissues, it can actually cause lots of inflammation and something we call fibrosis, a hardening of the tissue.

And one of the really frustrating things I discovered about lymphedema was that there's no single diagnosis for it. Unfortunately we don't have a criteria to diagnose it. It's a clinical diagnosis. And in an effort to be objective and scientific, people have applied diagnostic criteria like a 10% volume increase or two centimeters bigger on one side than the other. But you know that there really isn't a firm scientific diagnosis. So it's really a clinical disease, and people have symptoms which are swelling—what I find most important is thickening of the tissues and the skin. Sometimes it's easy to measure, like when it's in the arms and the legs, but sometimes it's very hard to measure when it's in the head and neck, because head and neck cancer patients develop lymphedema very, very commonly both externally and internally, when it's in the breast, which is very common, or when it's in the abdomen, the trunk.

So it's a problem that I find suffers from a lot of issues. One is the rampant lack of knowledge because it's not taught in medical school. The fact that people don't know how to get treatment, because the treatment really only came to the United States in 1990. And in 1998 the American Cancer Society looked at it and found that most physicians really didn't know much about lymphedema or its treatment. And I just recently found a journal article in my specialty released last month which reinforces that there is no treatment for lymphedema, and nothing could be further from the truth.

So what part of cancer treatment predisposes you to lymphedema? Actually, all of it. Lymph nodes are removed both for staging and for local control of cancer. There are scars that are created in surgery and lymph can't flow across scars. Radiation damages the lymphatic system, and actually so do certain chemotherapeutic agents as well. So all of the components that effectively treat your cancer can harm your immune system. Also some of our immune systems just aren't that robust at the very beginning, so we really can't tolerate an insult to it very well. And as we get older, our lymphatic systems tend to fatigue and get less resilient over time.

So basically, again, lymphedema is a damage to the lymphatic system. It can be caused by all the treatments that we get to cure or treat our cancers. And it's most obvious in the sense that it can cause swelling when the lymphatic system backs up, and the lymph fluid sits stagnant in the tissues. But there is a stage called latency stage where you really can't see the swelling, and that's the stage we'd like to keep lymphedema at. Lymphedema can occur at any point after treatment for your cancer. It's most common in the first three years, but the risk is actually lifelong.

Again, my experience with lymphedema was that it came on very suddenly after my surgery for breast cancer. And one thing I did learn in further research is that the lymphatics are very delicate, and you really don't want to disrupt them while they're trying to heal. I'd had a sentinel biopsy, and I thought I needed to do a lot of range of motion of my shoulder. So I was reaching up and hanging from door frames, and actually that was the worst thing I could've done. I developed something called a seroma, a pocket of fluid, and then something called axillary web syndrome, a lot of scarring of my deep lymphatics. That probably doubled or tripled my risk of getting lymphedema. So the one thing I have learned from further education in lymphedema is that people who get surgery for breast cancer in their axilla to remove lymph nodes really shouldn't stretch through the axilla for a good ten to fourteen days after the surgery. You're not going to lose range of motion in your shoulder, and you're going to give your lymphatic system the opportunity to heal the best that it can. Also, if you get a seroma, a collection of fluid in the axilla, best to have it removed by your surgeon.

Lymphedema—because it's a clinical diagnosis—the symptoms that you might feel can be heaviness, warmth, a sense of fullness. There's pain associated with it the way there's pain with any swelling. A sense of heaviness, and if you rub your skin or pinch it or pull it, you might feel that there's thickening in the skin where the fluid is being held. And what I've done to treat it and manage it is that I've found a wonderful lymphedema therapist, and I've learned how to do self-care at home because you need to live with this and manage it all of your life, or even manage the risk for it. So the self-care involves therapeutic exercises. For me, I actually wrap my arm and my hand every night. People can use different garments, but I find it works the best even though it is a lot of effort and effort I wish I didn't have to do. But the benefits are so powerful that it's worth it to me. I wear compression garments when I exercise, and I'm very careful when I fly. And I actually fly wrapped or in a compression garment because the barometric changes make my lymphedema worse. Also, I'm careful to avoid excess heat, damage to my skin. Sunburn is really important as well. But we also have discovered that exercise is really good for lymphedema because the lymphatic system works best when you contract the muscles, so I try and stay as active as I can. I know that I have to be cautious when I exercise my area at risk, which is my arm, so I try and do it thoughtfully and slowly. But I also do try and exercise as much as possible to stay fit. I try to avoid excess salt in my diet and drink plenty of fluids.

I actually trained as a lymphedema therapist in 2012 because I wanted to be able to treat the patients that I saw and understand the treatment, and I found this really helpful to be able to treat my patients. I worked in radiation oncology, although I am a family practice doctor, for three years and I found that although my patients were wonderful and saw all the members of their team, nobody really seemed to own their lymphedema. People didn't really check for it or refer patients, and I've found a lot of lymphedema not just in breast cancer, but in prostate cancer, gynecologic cancers, in lung cancer, head and neck cancer, and melanoma. And I really also found what my patients needed was not just to be sent to a lymphedema therapist who is a physical therapist or occupational therapist, but also to have me advocate for them that they get the treatment that they needed, that the treatment not just be based on some volume reduction, but on helping them manage the disease and be able to evaluate themselves to see if things got worse, to manage their work requirements, and to have the garments that they needed. And know that the garments only last for about six months and need to be replaced, and need to be replaced also if there's any weight gain. Also unfortunately, I saw way too many physicians tell patients to just run out and get an ace wrap, and ace wraps are just far too elastic and really are dangerous. The kind of wraps we use in lymphedema are called short-stretch bandages.

So what I discovered is that lymphedema is actually very common, much more common than we know. And I found if I asked, I found it. If I looked, I found it. And that because patients and physicians didn't know that there was effective treatment for it - and no one person seemed to feel that it was their job as part of the oncology treatment team to look for the lymphedema - patients weren't being asked and they weren't being examined. I would say be aware that lymphedema is a risk of all cancer treatments. Be aware of your body, and your body is changed due to cancer treatment but if you notice that you have a heaviness or a swelling, bring it to the attention of any of member of your treatment team who you feel comfortable with and get referred to a good lymphedema therapist. And there are websites to help you find a fully trained lymphedema therapist. Due to Medicare guidelines, lymphedema therapy is given by physical therapists and occupational therapists, but there are also many well-trained massage therapists who are out there who can assist in your treatment as well.

What I would say is that my experience with being treated for breast cancer is that my treatment team focused on treating my cancer. Very often the treatment can harm other parts of our bodies and our new normal is often difficult to sort out, and that lymphedema for some reason just is not in the medical education and people are just still continue to be unaware of it. Patients often aren't aware that they can seek treatment for it. So I'd say be aware of it, bring it up, seek treatment for it. For some reason it's a disease that feels disfiguring and embarrassing. Also, I think as physicians, we don't want to think that we've actually caused harm to our patients, so for many reasons it's just something that tends to be overlooked, but there's good treatments. Working in radiation oncology, I found that I could find a lot of lymphedema and also help patients get control of their lymphedema. Yes, it can be a chronic, incurable, permanent problem, but it's also one that can be managed and something that you can learn to live with in a way that it really minimizes the impact on your life. Again, I would suggest for patients that they become educated on it, and I've worked to help physicians become educated on it as well. And just know that—be aware of your body, if you feel heaviness, swelling, warmth, changes in the configuration. One of things we talk about are that your bony prominences may become obscured a little bit: you just can't see your knuckles. You can't see the tendons on the back of your wrist. Your elbow doesn't look as sharp. There's thickening to your skin. Your pores may be more obvious. Head and neck cancer patients may feel it internally when they go to swallow or see it in their necks. You can feel a thickening in your abdomen or swelling in your legs. Be aware of these symptoms, and report them to any member of your treatment team to get treated for it. Treatment is very effective, and the earlier you catch the problem, the more effective the treatment.

ASCO: Thank you Dr. Nudelman. More information on lymphedema can be found at lineagotica.info. And for more expert interviews and stories from people living with cancer, visit the Lineagotica Blog at lineagotica.info/blog.

Lineagotica is supported by the Conquer Cancer Foundation, which is working to create a world free from the fear of cancer by funding breakthrough research, sharing knowledge with physicians and patients worldwide, and supporting initiatives to ensure that all people have access to high-quality cancer care. Thank you for listening to this Lineagotica podcast.

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