Andrea Cheville, MD, associate professor of physical medicine and rehabilitation at Mayo Clinic, says that her goal in evaluating someone for possible lymphedema after breast cancer treatment boils down to one question: “How worried do I need to be about this woman?”
“Lymphedema is not really a ‘yes-no’ diagnosis: As with so many other medical conditions, such as diabetes, there are gradations,” says Dr. Cheville. “So a lymphedema evaluation is really about figuring out where a woman fits along the spectrum. Some women I see don’t have lymphedema and I’m not worried about them getting it. Others don’t have it yet, but for a variety of reasons I can predict they eventually will get it.
“Among those who do have lymphedema, I’m trying to figure out if they fit into a high-risk or low-risk category. By ‘high-risk,’ I mean women who are likely to develop a large arm and recurrent infections and deal with lymphedema as a major problem for the rest of their lives. In the low-risk group are women who may have some minor swelling — the affected arm is not much larger than the other — and the likelihood of this turning into a major problem is low. Certainly there is a wide spectrum in between, so I’m trying to see where each woman fits.”
The key to understanding where you fit is a thorough evaluation by an experienced lymphedema therapist. Typically, you can expect your therapist to do the following at your first appointment.
- Your lymphedema therapist should take your breast cancer history and a complete medical history. This includes the details of your breast cancer diagnosis and treatment: the type and location of the cancer, how many lymph nodes were removed, what type of surgery was done, and additional treatments such as radiation therapy and chemotherapy. If years have passed since you were treated for breast cancer, you may need to retrieve your medical records. If possible, bring your records with you to the appointment. Your therapist also should review your current or past medical conditions.
- Your therapist also should ask about the symptoms you’ve noticed, such as heaviness, tingling, or swelling, as well as their patterns of onset and triggers. “I always ask what happens to the arm, hand, or other affected area of the body in very ‘provocative situations’ — ones that are likely to cause an increase in lymph production,” says Dr. Cheville. “For example, what happens when you exercise? When it’s very hot outside?”
- Your therapist should ask about any pain in the arm, chest, trunk, or whatever part of the body is affected — what the pain feels like, how long it lasts, how intense it is. Pain could be a clue to some underlying injury or inflammation that is driving the lymphedema. “Sometimes if there is inflammation in the arm, that causes more production of lymph, and if we can solve that then we can solve the problem,” says Dr. Cheville.
- Your therapist should take a personal history that includes questions about lifestyle and exercise, nutrition, and weight. Dr. Cheville explains: “This is about getting a sense for the person: Is she active? Does she exercise? Is she overweight? Does she have many other risk factors for lymphedema that are not related to her breast cancer treatment? And do these put her at much higher risk for lymphedema and, even beyond that, for bad lymphedema?”
- Your therapist should look for changes in the skin and soft tissue of the arm, hand, chest, or other area that’s affected. He or she also should do a manual examination (called palpation) to feel for any signs of fibrosis, or scarring of the soft tissue under the skin.
- Your therapist should take circumferential measurements at several points along the hand, wrist, forearm, and upper arm. These can then be compared to any baseline measurements taken at the same points on the limb before you had surgery, and/or to measurements taken going forward. An increase of 2 centimeters or more suggests the presence of lymphedema, according to many experts. If you didn’t have any measurements taken previously, your therapist would use your unaffected arm as a point of comparison. (If you’re experiencing lymphedema of the chest, breast, or trunk, this would be diagnosed based on a physical exam and your symptom history. No measurements would be taken.)
- Your therapist may need to rule out other possible causes of the symptoms, such as a recurrence of the cancer, deep vein thrombosis (blood clot), or infection. These are more likely to be a concern if you’re experiencing sudden severe swelling — for instance, a major increase in arm size that seemed to happen overnight. Imaging studies such as MRI, CT scans, or ultrasound may be needed to rule out these other causes.
- Your therapist may order additional tests as needed to aid in diagnosing the lymphedema. Although circumferential measurements are the most common test, other tools may be used to look for changes in the limb and skin. You can read more about them on the Lymphedema Tests page.
Unless more tests are necessary, your lymphedema therapist typically will make a diagnosis at this appointment and discuss treatment options. Together you can develop a treatment plan that meets your needs and suits the kind of lymphedema you have — ranging from mild to moderate to severe. (See the Lymphedema Treatments section for more information.) You should leave the appointment with a full understanding of your treatment plan and a scheduled follow-up visit.
In some cases, your lymphedema therapist may begin treatment at this first visit, particularly if you have pronounced swelling or other uncomfortable symptoms. “In many cases I do manual lymphatic drainage and may use bandages,” says Linda T. Miller, PT, DPT, CLT, clinical director of the Breast Cancer Physical Therapy Center, Ltd., in Malvern, PA, referring to two main treatments for lymphedema. “I always do something that the patient can take with her. So it may be teaching her some exercises or stretching she can do. I want the patient to leave my office feeling empowered.”