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Lymphedema Challenges from an Infectious Disease Specialist's Perspective
Lymphedema is a disease that is often misunderstood by patients as well as healthcare professionals. Yet nearly 10 million Americans live with this potentially deadly disease. Here, the Lymphatic Duo provides readers with insights from three perspectives: that of a medical doctor specializing in infectious diseases, a certified Lymphedema therapist, and a Lymphedema survivor.
Dr. Carlos Figueroa Castro is an infectious disease specialist and professor with Froedtert and the Medical College of Wisconsin. His research has been published in peer-reviewed journals and national medical conferences. He is board-certified in internal medicine, infectious diseases, and clinical informatics, and is a fellow of the American College of Physicians.
Teresa Iattoni, DPT, CLS, CES, has specialized in treating Lymphedema patients for the past 19 years, having treated an estimated 6,000 patients. She holds a doctoral degree in physical therapy.
Jennifer Lee Edmondson, JD, is a 12-year survivor of metastatic breast cancer, and secondary Lymphedema, which developed after she underwent double mastectomies, left axillary lymph node dissection (removal of 20 lymph nodes), chemo, radiation, and final reconstruction. She’s an attorney in private practice, and founder of Health, Education & Welfare, a nonprofit whose Compression Garment Program helps patients in financial need.
What are some of the biggest challenges facing patients diagnosed with Lymphedema?
Dr. Figueroa Castro: Lymphedema is a serious, chronic condition that requires ongoing management, in order to try to prevent complications that could be life-threatening. It's crucial for patients to learn how to care for their affected areas, practice good skin care, and recognize signs of infection or worsening swelling.
Lymphedema patients face challenges such as swelling, discomfort, and the risk of infections, such as cellulitis. They may also encounter emotional and social challenges due to changes in their appearance and limitations in daily activities.
For medical professionals, treating Lymphedema can be complex. One challenge is ensuring access to specialized care, as not all healthcare providers are familiar with this condition. Another is finding the most effective treatment approach for each patient since Lymphedema can vary in severity and cause.
Iattoni: I agree. The challenges that patients face can have serious implications on their health and quality of life. As Dr. Figueroa Castro mentioned, one great challenge is finding healthcare providers who are knowledgeable regarding cellulitis and Lymphedema. Patients struggle to find physicians who are well-versed in dermatolymphangioadenitis (i.e. cellulitis) and even more difficult is finding a physician with a good understanding of Lymphedema.
Patients who have the best outcomes when diagnosed with infections are those who are diagnosed early and have the appropriate antibiotics implemented immediately. This is complicated by the fact that general skin changes (edema, mild redness, firmness, hyperkeratosis) and comorbidities (i.e. diabetes, heart disease) complicate the overall health of the individual, and can result in a compromised healing environment.
Also, patients with Lymphedema often times do not have a clear understanding of the severe nature of cellulitis. Just like with anything, you don't know what you don't know. Until someone has seen or had a severe cellulitis infection, it does not seem possible that it will impact them.
Edmondson: A big challenge for me was not fully understanding or recognizing the potential danger posed by cellulitis infections - those can lead to sepsis, which can be deadly! So when I had my first cellulitis infection, I thought it was just the flu.
Now with the passage of the Lymphedema Treatment Act2, which takes effect next year, it is hoped that at least for Medicare patients, there will be better coverage, but we don’t know how that will work at the time of this writing . Without an appropriate treatment plan for Lymphedema, patients risk having their Lymphedema being poorly managed or out of control, health complications that might require repeated hospitalizations.
Dr. Figueroa Castro touched on a good point - the emotional and social challenges faced by Lymphedema patients. Lymphedema survivors can feel disfigured. Finding clothes that fit right can be very difficult. For example, if a person has Lymphedema in their left leg and foot, that side is larger than their ‘normal’ unaffected leg and foot. They need pants that will have one leg that is larger than the other; and oftentimes, they have problems finding shoes that will fit. One possible resource is Pandere Shoes, which specializes in shoes for people with medical conditions like Lymphedema.
For me, my left arm is larger than my right arm and I hate it. I feel like I’m carrying around this freakish arm. It’s a constant reminder that I had metastatic breast cancer and that I will forever have Lymphedema. I feel self-conscious and worry about wearing sleeveless tops or even short sleeves. But I also remind myself that so many others truly have it worse than I do.
What is cellulitis infection?
Dr. Figueroa Castro: Cellulitis is a bacterial skin infection. In Lymphedema patients, it can be serious because their impaired lymphatic system may not effectively fight the infection. Prompt treatment is crucial to prevent its spread.
Iattoni: Cellulitis can be deadly and lead to systemic septic conditions. I’ve had multiple patients hospitalized for a week and then followed by long-duration use of antibiotics due to the severity of their condition. Patients also don't grasp that having cellulitis can result in the worsening of their Lymphedema, which then becomes cyclic (i.e. worse Lymphedema, increased risk of cellulitis, another cellulitis, worsening Lymphedema).
Edmondson: Bacteria can cause cellulitis infection, and that bacteria can enter the skin through any tiny opening or cut, even ones that are so small you can’t feel or see them. That’s why it’s advised that Lymphedema survivors avoid manicures if they have Lymphedema of the upper extremities, and pedicures if they have Lymphedema in their lower extremities.
What should a person do if they have cellulitis symptoms? Is it important to seek out medical treatment immediately?
Dr. Figueroa Castro: If someone with Lymphedema develops symptoms of cellulitis (e.g., redness, warmth, swelling, fever), they should seek immediate medical attention. Prompt treatment with antibiotics is essential to prevent complications and worsening infection. Complications can include infections like cellulitis, reduced limb function, skin changes, and psychological distress. It's essential to manage Lymphedema to prevent these complications.
Edmondson: With my first cellulitis infection, when I finally called my primary care physician and reported my symptoms, I got a real shock. They told me to get to the clinic ASAP, where they would inject me with antibiotics. If that didn’t work, then I would have to be admitted to the hospital and put on IV antibiotics. It was very serious.
I’ve spoken with many Lymphedema survivors. One statement by a woman is forever burned into my mind. She said, “Every time I have a cellulitis infection and am rushed to the hospital, I think that I’m dying.”
What do you wish other healthcare professionals knew about Lymphedema?
Dr. Figueroa Castro: I wish healthcare professionals were more aware of the condition and its treatment options. Knowledge among healthcare providers can improve early diagnosis and access to appropriate care for patients.
Edmondson: From the perspective of a patient, I wish healthcare providers who do not specialize in Lymphedema care would learn more about the disease, so when they are presented with a patient who reports symptoms consistent with Lymphedema, the provider will recognize that, and make a referral either to a certified Lymphedema therapist or physician who is experienced with Lymphedema. I consider myself very fortunate, because I have a primary care physician who is knowledgeable about Lymphedema, and also recognizes when it's time to refer me to someone with more experience and knowledge.
What are the most common misconceptions about Lymphedema?
Dr. Figueroa Castro: A common misconception is that Lymphedema is solely related to cancer treatment. While it can be a side effect of cancer therapies, it can also occur due to other causes. Another misconception is that it's untreatable, when in fact, there are effective management strategies.
Edmondson: I’ve met people who were born with Lymphedema (primary Lymphedema), and also people who developed it after sustaining physical trauma to a part of their body. I’ve met many Lymphedema survivors who never had cancer. For instance, I met a man who was in a motorcycle accident and injured his leg and then developed Lymphedema in his injured leg. A number of years ago, there was a study of US Air Force trainees who developed bilateral lower extremity Lymphedema after basic training.
I think another misconception is that Lymphedema is not a serious medical condition. Just recently I read the obituary of a woman from Wausau, Wisconsin, who died after a long battle with Lymphedema.
What can Lymphedema survivors do?
Edmondson: Understand that there is hope, you can do this. Having Lymphedema is an ongoing, lifelong endeavor. We Lymphedema survivors have the power within ourselves to be our own best advocates. It’s not an easy road, but, it is very doable and all you need to do is take it one step at a time. I’ve lived with Lymphedema for 12 years, and I still have much to learn. Medical science is making advances, so the area of Lymphedema treatment is always evolving. I encourage you to keep on learning. Don’t be afraid to try new things, and if they don’t work for you, then move on to something else. So far, this is what I’ve found works best for me:
1. Find the best healthcare providers possible and ask questions, learn everything you can;
2. Maintain a healthy weight; anti-inflammatory diet, anti-inflammatory supplements;
3. Regular exercise and being physically active - find something you enjoy doing;
4. Consult with a certified Lymphedema therapist for in-person manual drainage massage and monitoring;
5. Daily use of pneumatic compression - I use the Flexitouch Plus from Tactile Medical ;
6. Take precautions to prevent cellulitis infections, including taking antibiotics before any dental work, including routine cleanings;
7. If prescribed, wear a compression garment every day; and changing to a fresh, clean one every day;
8. Consult with a physician experienced with Lymphedema;
9. Find and talk with other Lymphedema survivors;
10. Keep up to date on the latest in Lymphedema - one way is through simple online searches.
Iattoni: Small daily habits can make huge differences:
1. Wash daily/shower/bath
2. Protect skin: lotion in dry weather/prevent cracks, use bug sprays, avoid needle sticks (if unable then make sure very clean)
3. Wear clean clothing/Lymphedema garment: wearing clean clothing results in less bacteria and viruses next to skin
4. Address cuts/scraps immediately when seen
5. Manage Lymphedema: keep size of Lymphedema down, wear Lymphedema garment, use Lymphedema pump, have regular visits with Lymphedema provider
6. Stay healthy: eat an anti-inflammatory diet, exercise, maintain your weight, keep your gut micro-biome healthy
Dr. Figueroa Castro:
1. Seeking specialized care is important. Certified Lymphedema therapists can provide specific treatments, and infectious disease specialists can help manage infections effectively. Patients should seek healthcare providers experienced in treating Lymphedema. Look for certifications, experience, and a collaborative approach to care.
2. Patients should avoid injury or trauma to the affected limbs - including avoiding blood draws from the affected side; practice good hygiene, wear compression garments as prescribed, and maintain a healthy lifestyle to control weight and reduce the risk of exacerbation.
3. Patients should engage in regular, low-impact exercise, maintain a balanced diet, stay hydrated, and manage stress. Additionally, they should adhere to their prescribed treatment plan, which may include compression therapy.
4. I recommend keeping an eye on the latest research in the field, as advancements in treatment and understanding of the condition are ongoing. Check reputable medical journals and organizations for updates and studies relevant to Lymphedema. I'll leave you with two recent studies that I think might be of interest :
Dr. Carlos Figueroa Castro is an infectious disease specialist and professor with Froedtert and the Medical College of Wisconsin. His research has been published in peer-reviewed journals and national medical conferences. He is board-certified in internal medicine, infectious diseases, and clinical informatics, and is a fellow of the American College of Physicians.
Teresa Iattoni, DPT, CLS, CES, has specialized in treating Lymphedema patients for the past 19 years, having treated an estimated 6,000 patients. She holds a doctoral degree in physical therapy.
Jennifer Lee Edmondson, JD, is a 12-year survivor of metastatic breast cancer, and secondary Lymphedema, which developed after she underwent double mastectomies, left axillary lymph node dissection (removal of 20 lymph nodes), chemo, radiation, and final reconstruction. She’s an attorney in private practice, and founder of Health, Education & Welfare, a nonprofit whose Compression Garment Program helps patients in financial need.
What are some of the biggest challenges facing patients diagnosed with Lymphedema?
Dr. Figueroa Castro: Lymphedema is a serious, chronic condition that requires ongoing management, in order to try to prevent complications that could be life-threatening. It's crucial for patients to learn how to care for their affected areas, practice good skin care, and recognize signs of infection or worsening swelling.
Lymphedema patients face challenges such as swelling, discomfort, and the risk of infections, such as cellulitis. They may also encounter emotional and social challenges due to changes in their appearance and limitations in daily activities.
For medical professionals, treating Lymphedema can be complex. One challenge is ensuring access to specialized care, as not all healthcare providers are familiar with this condition. Another is finding the most effective treatment approach for each patient since Lymphedema can vary in severity and cause.
Iattoni: I agree. The challenges that patients face can have serious implications on their health and quality of life. As Dr. Figueroa Castro mentioned, one great challenge is finding healthcare providers who are knowledgeable regarding cellulitis and Lymphedema. Patients struggle to find physicians who are well-versed in dermatolymphangioadenitis (i.e. cellulitis) and even more difficult is finding a physician with a good understanding of Lymphedema.
Patients who have the best outcomes when diagnosed with infections are those who are diagnosed early and have the appropriate antibiotics implemented immediately. This is complicated by the fact that general skin changes (edema, mild redness, firmness, hyperkeratosis) and comorbidities (i.e. diabetes, heart disease) complicate the overall health of the individual, and can result in a compromised healing environment.
Also, patients with Lymphedema often times do not have a clear understanding of the severe nature of cellulitis. Just like with anything, you don't know what you don't know. Until someone has seen or had a severe cellulitis infection, it does not seem possible that it will impact them.
Edmondson: A big challenge for me was not fully understanding or recognizing the potential danger posed by cellulitis infections - those can lead to sepsis, which can be deadly! So when I had my first cellulitis infection, I thought it was just the flu.
Many Lymphedema patients face the challenge of getting adequate treatment for Lymphedema, and their medically necessary compression garments. Often times private health insurance provides inadequate or no coverage for treatment and compression garments, and historically, Medicare provided no coverage for compression garments. This is the reason why my nonprofit started The Compression Garment Fund Program, which helps Lymphedema patients obtain their medically necessary compression garments1.
Now with the passage of the Lymphedema Treatment Act2, which takes effect next year, it is hoped that at least for Medicare patients, there will be better coverage, but we don’t know how that will work at the time of this writing . Without an appropriate treatment plan for Lymphedema, patients risk having their Lymphedema being poorly managed or out of control, health complications that might require repeated hospitalizations.
Dr. Figueroa Castro touched on a good point - the emotional and social challenges faced by Lymphedema patients. Lymphedema survivors can feel disfigured. Finding clothes that fit right can be very difficult. For example, if a person has Lymphedema in their left leg and foot, that side is larger than their ‘normal’ unaffected leg and foot. They need pants that will have one leg that is larger than the other; and oftentimes, they have problems finding shoes that will fit. One possible resource is Pandere Shoes, which specializes in shoes for people with medical conditions like Lymphedema.
For me, my left arm is larger than my right arm and I hate it. I feel like I’m carrying around this freakish arm. It’s a constant reminder that I had metastatic breast cancer and that I will forever have Lymphedema. I feel self-conscious and worry about wearing sleeveless tops or even short sleeves. But I also remind myself that so many others truly have it worse than I do.
What is cellulitis infection?
Dr. Figueroa Castro: Cellulitis is a bacterial skin infection. In Lymphedema patients, it can be serious because their impaired lymphatic system may not effectively fight the infection. Prompt treatment is crucial to prevent its spread.
Iattoni: Cellulitis can be deadly and lead to systemic septic conditions. I’ve had multiple patients hospitalized for a week and then followed by long-duration use of antibiotics due to the severity of their condition. Patients also don't grasp that having cellulitis can result in the worsening of their Lymphedema, which then becomes cyclic (i.e. worse Lymphedema, increased risk of cellulitis, another cellulitis, worsening Lymphedema).
Edmondson: Bacteria can cause cellulitis infection, and that bacteria can enter the skin through any tiny opening or cut, even ones that are so small you can’t feel or see them. That’s why it’s advised that Lymphedema survivors avoid manicures if they have Lymphedema of the upper extremities, and pedicures if they have Lymphedema in their lower extremities.
What should a person do if they have cellulitis symptoms? Is it important to seek out medical treatment immediately?
Dr. Figueroa Castro: If someone with Lymphedema develops symptoms of cellulitis (e.g., redness, warmth, swelling, fever), they should seek immediate medical attention. Prompt treatment with antibiotics is essential to prevent complications and worsening infection. Complications can include infections like cellulitis, reduced limb function, skin changes, and psychological distress. It's essential to manage Lymphedema to prevent these complications.
Edmondson: With my first cellulitis infection, when I finally called my primary care physician and reported my symptoms, I got a real shock. They told me to get to the clinic ASAP, where they would inject me with antibiotics. If that didn’t work, then I would have to be admitted to the hospital and put on IV antibiotics. It was very serious.
I’ve spoken with many Lymphedema survivors. One statement by a woman is forever burned into my mind. She said, “Every time I have a cellulitis infection and am rushed to the hospital, I think that I’m dying.”
What do you wish other healthcare professionals knew about Lymphedema?
Dr. Figueroa Castro: I wish healthcare professionals were more aware of the condition and its treatment options. Knowledge among healthcare providers can improve early diagnosis and access to appropriate care for patients.
Edmondson: From the perspective of a patient, I wish healthcare providers who do not specialize in Lymphedema care would learn more about the disease, so when they are presented with a patient who reports symptoms consistent with Lymphedema, the provider will recognize that, and make a referral either to a certified Lymphedema therapist or physician who is experienced with Lymphedema. I consider myself very fortunate, because I have a primary care physician who is knowledgeable about Lymphedema, and also recognizes when it's time to refer me to someone with more experience and knowledge.
What are the most common misconceptions about Lymphedema?
Dr. Figueroa Castro: A common misconception is that Lymphedema is solely related to cancer treatment. While it can be a side effect of cancer therapies, it can also occur due to other causes. Another misconception is that it's untreatable, when in fact, there are effective management strategies.
Edmondson: I’ve met people who were born with Lymphedema (primary Lymphedema), and also people who developed it after sustaining physical trauma to a part of their body. I’ve met many Lymphedema survivors who never had cancer. For instance, I met a man who was in a motorcycle accident and injured his leg and then developed Lymphedema in his injured leg. A number of years ago, there was a study of US Air Force trainees who developed bilateral lower extremity Lymphedema after basic training.
I think another misconception is that Lymphedema is not a serious medical condition. Just recently I read the obituary of a woman from Wausau, Wisconsin, who died after a long battle with Lymphedema.
What can Lymphedema survivors do?
Edmondson: Understand that there is hope, you can do this. Having Lymphedema is an ongoing, lifelong endeavor. We Lymphedema survivors have the power within ourselves to be our own best advocates. It’s not an easy road, but, it is very doable and all you need to do is take it one step at a time. I’ve lived with Lymphedema for 12 years, and I still have much to learn. Medical science is making advances, so the area of Lymphedema treatment is always evolving. I encourage you to keep on learning. Don’t be afraid to try new things, and if they don’t work for you, then move on to something else. So far, this is what I’ve found works best for me:
1. Find the best healthcare providers possible and ask questions, learn everything you can;
2. Maintain a healthy weight; anti-inflammatory diet, anti-inflammatory supplements;
3. Regular exercise and being physically active - find something you enjoy doing;
4. Consult with a certified Lymphedema therapist for in-person manual drainage massage and monitoring;
5. Daily use of pneumatic compression - I use the Flexitouch Plus from Tactile Medical ;
6. Take precautions to prevent cellulitis infections, including taking antibiotics before any dental work, including routine cleanings;
7. If prescribed, wear a compression garment every day; and changing to a fresh, clean one every day;
8. Consult with a physician experienced with Lymphedema;
9. Find and talk with other Lymphedema survivors;
10. Keep up to date on the latest in Lymphedema - one way is through simple online searches.
Iattoni: Small daily habits can make huge differences:
1. Wash daily/shower/bath
2. Protect skin: lotion in dry weather/prevent cracks, use bug sprays, avoid needle sticks (if unable then make sure very clean)
3. Wear clean clothing/Lymphedema garment: wearing clean clothing results in less bacteria and viruses next to skin
4. Address cuts/scraps immediately when seen
5. Manage Lymphedema: keep size of Lymphedema down, wear Lymphedema garment, use Lymphedema pump, have regular visits with Lymphedema provider
6. Stay healthy: eat an anti-inflammatory diet, exercise, maintain your weight, keep your gut micro-biome healthy
Dr. Figueroa Castro:
1. Seeking specialized care is important. Certified Lymphedema therapists can provide specific treatments, and infectious disease specialists can help manage infections effectively. Patients should seek healthcare providers experienced in treating Lymphedema. Look for certifications, experience, and a collaborative approach to care.
2. Patients should avoid injury or trauma to the affected limbs - including avoiding blood draws from the affected side; practice good hygiene, wear compression garments as prescribed, and maintain a healthy lifestyle to control weight and reduce the risk of exacerbation.
3. Patients should engage in regular, low-impact exercise, maintain a balanced diet, stay hydrated, and manage stress. Additionally, they should adhere to their prescribed treatment plan, which may include compression therapy.
4. I recommend keeping an eye on the latest research in the field, as advancements in treatment and understanding of the condition are ongoing. Check reputable medical journals and organizations for updates and studies relevant to Lymphedema. I'll leave you with two recent studies that I think might be of interest :
a. “Axillary Treatment and Chronic Breast Cancer-Related Lymphedema: Implications for Prospective Surveillance and Intervention From a Randomized Controlled Trial.” This study revealed that the kind of treatment patients receive in the armpit area significantly affects their risk of developing Lymphedema, along with other risk factors, like being overweight, living in rural areas, getting radiation to specific parts of the body, and certain chemotherapy drugs. These findings can help in designing better ways to screen, prevent, and treat Lymphedema in breast cancer patients.
b. “Risk Factors and Racial and Ethnic Disparities in Patients With Breast Cancer-Related Lymphedema”, aimed to understand the chances of women developing breast cancer-related Lymphedema after having certain lymph nodes removed. After two years, 24% of participants developed Lymphedema, with some difference based on race and ethnicity, with an increased risk in Black and Hispanic women. Lymphedema was almost three times as common in patients receiving chemotherapy before surgery when compared to those who had surgery first. Women with ERBB2+ tumors had a reduced risk.
Final Words
Dr. Figueroa Castro: I am optimistic for the future. Ongoing scientific research, advancements in treatment, and understanding of the condition are continuing. By following the simple precautions we’ve discussed, Lymphedema patients can do a great deal in terms of self-care.
Iattoni: I believe in you! I may believe more in your ability to manage your Lymphedema than you may at this time! I believe in you because I know that when addressed appropriately, Lymphedema is extremely manageable. The advances in technology both from a garment and pump perspective have made the daily management of Lymphedema more feasible. I know you can do this! Focus on one step at a time, even if your footsteps seem tiny and slow!
Edmondson: Lymphedema can make us feel like we’re all alone and no one understands; but the reality is, an estimated 10 million Americans live with Lymphedema - that’s a lot of people who are in the same boat with us! Do your best to take good care of yourself, accept your imperfections, and believe in your ability to evolve and develop resilience. We’re all works in progress!
a. Axillary Treatment and Chronic Breast Cancer-Related Lymphedema: Implications for Prospective Surveillance and Intervention From a Randomized Controlled Trial”, (Boyages J et al. JCO Oncol Pract. 2023 Oct 10:OP2300060. doi: 10.1200/OP.23.00060. Epub ahead of print. PMID: 37816208), https://pubmed.ncbi.nlm.nih.gov/37816208/
b. “Risk Factors and Racial and Ethnic Disparities in Patients With Breast Cancer-Related Lymphedema”, (Montagna G et al. JAMA Oncol. 2022 Aug 1;8(8):1195-1200. doi: 10.1001/jamaoncol.2022.1628. PMID: 35679026; PMCID: PMC9185510.), https://pubmed.ncbi.nlm.nih.gov/35679026/