Ten Perspectives on Men and Lymphedema

Dr. Kristina Sanchez is board certified in family medicine, and is a diplomat of the American Board of Venous and Lymphatic Medicine. She is also American Vein & Vascular Institute’s “go-to” expert in lymphedema, having dedicated herself to the practice of phlebology with us since 2009. She has developed a professional interest in lymphatic disease, as there is distinct overlap in the symptoms of lymphedema and venous disease.

I interviewed Dr. Sanchez and mined her years of lymphedema knowledge and expertise. What came out of our discussion was an understanding that though women, as often as men, are diagnosed and treated for lymphedema, men typically delay seeking treatment and can present with more advanced lymphedema.

Lymphedema is loosely defined as swelling, often in one or both arms/legs. It is caused by a blockage or overload of the lymphatic system, causing lymph fluid to build up. Lymphedema needs to be looked at as a chronic illness that can be effectively controlled with an educated and dedicated patient. It is an illness with significant functional, emotional and psychosocial impact.

How often do you see lymphedema in your male patients?

There is an old adage in medicine that the diagnoses that you make are the diagnoses that you know. I have found that the more I know about lymphedema, the more I am able to recognize when it is present and make the appropriate referrals for treatment. It is analogous to the referring offices I educate about venous disease—the more they know about it, the more they refer to our practice. Historically, about 5% of the patients I diagnosed with venous disease also had lymphedema. It’s now closer to 10- 15%. Keep in mind that I am in a practice where I see and focus on people’s legs every day, and there is an increased incidence of lymphatic dysfunction in chronic venous insufficiency patients.

My community has a draw of about 200,000 people. There are two community hospitals and no academic medical center. Resources for diagnosis of lymphatic disease are typical of a smaller community, so there is a need for education. There are very few articles on lymphedema in men specifically, but knowing that lymphedema affects men and women equally, we just need to know what to look for, what questions to ask and how to talk about it.

What do most of your lymphedema patients complain about?

Men and women both complain most about swelling. It’s typically asymmetric, and their legs feel heavy and uncomfortable. Sometimes they are pain-free. More often than not, they complain about some limitation in their lifestyle. Perhaps they can’t do certain physical activities, like stand for work or play sports because of their lymphedema. Sometimes, it is as simple as having a pant leg that feels tighter than the other.

Many of my patients complain that they have had these symptoms for years. I saw a patient last week that has seen many health care providers over the last 10 years for his significant unilateral leg swelling. Not one of those providers ever mentioned the word lymphedema, and he had never been referred to a lymphedema therapist for his condition. With his recurrent episodes of cellulitis, all he had been told was that he had a “chronic Staph infection.” The lack of recognition of lymphedema by health care providers is not an uncommon complaint.

Repeated infections are also a common complaint. If I see a patient with more than two episodes of lower extremity cellulitis in a year, it’s a red flag for lymphedema and I recommend referral to a lymphedema specialist.

What are some of the common physical exam features you look for to diagnose lymphedema?

Stemmer’s sign is a useful test: Pinch skin along the top of the second toe. If you can make a nice fold, there is either no lymphedema or an early stage of lymphedema. If you can’t “tent” the skin, there is fibrosis related to chronic protein deposition. The beauty of this finding is that you can have a false negative, but there is no false positive.

With late stages of lymphedema, the skin can become thickened and hard. These changes develop chronically over time and are due to a build of stagnant protein-rich lymphatic fluid and resultant inflammatory changes in the tissue. Understanding the pathophysiology makes it easier to understand why certain physical exam findings are present.

Other things to look for:

  • Size discrepancy in the legs
  • Nodular skin thickening
  • Swelling that will pit with manual pressure (early stages). The edema is non-pitting in later stages due to tissue fibrosis.

It’s important to note that if the skin is discolored, it is more likely to be venous insufficiency rather than lymphedema, even with swelling. The skin discolors because of hemosiderin—old red blood cells that were pushed into the insterstitium because of high intravenous pressure. This doesn’t happen with lymphedema, as the high pressure comes from the lymphatics.

Once you have a suspicion of lymphedema, do you treat men and women differently?

Education is by far the most critical first step, no matter who you are. Patients need to know there are treatment options, but understanding it takes lifelong management and effort. There are some very informative brochures that you can give to your patients to help them visualize what is going on with lymphedema. A simple booklet called “Lymphedema - Its Cause and How to Manage It,” can be conveniently provided through the Jobst company free of charge for your office.

By far the most important takeaway after diagnosis is that treatment is a big commitment with frequent trips to me or a certified lymphatic therapist (CLT). With men in particular, I find that they must have enough information, because if they don’t understand, they may not ask for help.

If the patient is game for treatment, then I start with referral to a certified lymphatic therapist. Typically, our patients get about 10-12 visits per year covered by their health insurance.

What are the best diagnostic tests for lymphedema?

Since lymphedema affects men and women equally, the tests are the same. I recommend the following diagnostics:

  • Lymphoscintigraphy – a nuclear medicine study where a small amount of fluid is injected between the toes and followed with a gamma camera. Lymphedema takes on a very characteristic drainage pattern. This study is done in the radiology department of our local hospital.
  • Ultrasound – This is occasionally useful, as skin and subcutaneous thickness measurements can be made and edema is easily recognized.
  • Contrast lymphography – Although this is the gold standard for diagnosis of lymphatic disease, it is not commonly performed and, in a small community, is difficult to find someone to do it.
  • Blood smear – Filariasis, the most common cause of lymphedema worldwide, is diagnosed with a blood smear looking for microfilariae. I have only seen this in Haiti during a medical mission trip.

I commonly see patients put on diuretics for lower extremity edema. It’s telling if the diuretics don’t work, because diuretics are ineffective in lymphedema patients. Since there is so much protein deposition in lymphedema with high interstitial oncotic pressure, the fluid does not respond to diuretics. It has to be mobilized by other means.

How often do you concurrently diagnose lymphedema with venous disease?

Commonly. Venous disease is extremely common, and its physical exam findings and symptom constellation often overlap with lymphedema. I will always order a venous insufficiency ultrasound and comprehensive deep vein evaluation to ensure any mechanical obstruction or source of higher pressure in the leg is addressed. Sometimes the edema resolves. When it does not, lymphedema is often the source.

Do you see venous disease combined with lymphedema more in men or women?

Overall, about the same. Venous reflux disease is more common in women, so I tend to see more female patients. Also, women tend to be more proactive about their health, so they are making the time to come in and be checked. That said, lymphatic disease is more severe in my male patients. By paying attention to the fact there may be both disease states present is critical toward ensuring a happy patient—male or female.

What is your approach to managing lymphedema in patients with venous disease?

If the patient has early stage lymphedema, I will treat it concurrently with my vein treatment protocol. For advanced lymphedema, I like to refer to a CLT prior to beginning any treatments for venous disease. Once the tissue fibrosis begins to soften and the volume of edema is reduced, vein access, sonographic visualization and tumescent administration is all easier.

All of my lymphedema patients are referred to a local CLT. I make sure to refer patients to someone close to their home, as treatment requires a lot of visits. I also send notes and patient photos to alert the CLT to what type of treatment they are beginning and any unique aspects about the patient.

What do CLTs do and how do you find one?

CLTs educate, implement and provide the five fundamental cornerstones of lymphedema care. CLTs often start off with a background of physical therapy or occupational therapy, then receive extra training so they are used to interacting with all types of people and healthcare situations. CLTs can also be massage therapists, nurses or doctors.

  • Skin and nail care
  • Establishing a supervised patient exercise routine
  • Manual lymphatic drainage (MLD), which includes massage, deep breathing and passive ROM
  • Compression bandaging (show the patient how to do it)
  • Self-care management

Contact the Lymphology Association of North America, or call your local hospital and ask for the rehabilitation or physical therapy department.

Lymphedema is not gender specific in presentation. However, men tend to delay asking about their symptoms and seeking treatment, so they often have more advanced disease by the time they are treated, versus women. Likewise, because there are more women seen in our vein practice, more women are diagnosed with lymphedema alongside vein disease.

Education is critical since lymphedema requires long-term management. Perhaps talking to women about the men in their lives and whether they have symptoms will spur conversation at home and possibly motivate those men to be seen and treated. Connecting with women often has positive outcomes for the health situation of their men.