Finding a Lymphedema Specialist
A lymphedema specialist is a healthcare professional who diagnoses, treats, and helps to manage lymphedema. Experts can include:
doctors who specialize in physical medicine and rehabilitation (also called physiatrists)
nurses
physical therapists
occupational therapists
massage therapists
Although it’s best to find a lymphedema specialist before you begin breast cancer treatment, it’s never too late to find one.
You can ask your doctor, cancer center, or hospital-based cancer program to recommend someone who specializes in breast cancer-related lymphedema. The Lymphology Association of North America (LANA) set up standards and a testing system to certify a minimum level of training, knowledge, and experience. But not all lymphedema specialists are necessarily certified. For example, all of the physical and occupational therapists who are part of NewYork-Presbyterian’s Lymphedema Management Program have expert training in treating lymphedema, and many of them are also certified by LANA.
You can also find a lymphedema specialist by using the online directories provided by the National Lymphedema Network (NLN) and LANA.
Questions to ask a lymphedema specialist
Here are some questions to help you as you narrow your search for a lymphedema specialist:
Which types of health insurance do you accept?
How long have you been a practicing lymphedema specialist?
Have you received specific training in all types of lymphedema treatments?
When and where did you complete your training in lymphedema management and treatment?
Are you LANA or otherwise certified?
Do you participate in continuing professional education on lymphedema?
How much of your practice focuses on managing lymphedema after breast cancer treatment? How many people with breast cancer do you see in a typical week?
Are you experienced in fitting people for compression sleeves and garments, or can you refer me to a fitter with your medical supply company?
Would you feel comfortable with letting me speak to a couple of your current patients?
If you live in a remote area, it may be more challenging to find a lymphedema specialist close to home. Try to find someone within driving distance who can provide an initial consultation and some follow-up care.
What to expect at your first appointment
During your first appointment, the lymphedema specialist can:
measure the distance around (circumference) your arms and hands
determine how strong your arms and upper body are and note your current activity level
recommend a post-surgery exercise and rehabilitation program that is right for you
show you stretching and flexibility exercises that can increase your arm’s range of motion and prevent stiffness after surgery
explain the signs and symptoms of lymphedema and what you should do if you experience them
schedule follow-up visits for the months and even years after surgery
After conducting a thorough evaluation, your lymphedema specialist can let you know how mild, moderate, or severe the lymphedema is and its stage.
What to say to your lymphedema specialist
Be prepared to share your complete medical history, including your breast cancer history:
how long ago you were diagnosed
the type and location of the breast cancer
the number of lymph nodes removed
the type of surgery you had
any additional treatments you had, such as radiation therapy or chemotherapy
If possible, take your medical records with you.
Let the specialist know about any symptoms you’ve noticed, such as heaviness, tingling, swelling, or pain. It also makes sense to tell your therapist if you notice symptoms when you exercise or when it’s very hot outside. Some experts recommend that you keep a diary of symptoms so you don’t forget to mention anything relevant.
The physical exam
The lymphedema specialist conducts a manual examination (called palpation) to feel for any signs of scarring of the soft tissue under the skin (called fibrosis).
The specialist also measures the distance around your hands, wrists, forearms, and upper arms at regular intervals. Both arms are measured to make it easier to spot any size differences.
Although specialists use these circumference measurements to monitor for obvious swelling in the arms, other tests are needed to assess lymphedema of the chest, breast, or trunk.
Lymphedema tests
The following tests help lymphedema specialists diagnose and monitor lymphedema, including how well it’s responding to treatment.
Instead of measuring the arm volume, bioimpedance scanning detects the amount of fluid in the arms. The scanning device passes a small, painless electrical current through the arms and measures resistance to the current. The device measures up and down both arms. The higher the fluid content in the spaces between the tissues (also known as interstitial fluid), the lower the resistance.
MRI and CT scans can help specialists evaluate soft tissue for lymphedema-related changes. In some cases, specialists might order images from a nuclear medicine technique known as lymphoscintigraphy. During this procedure, specialists inject small amounts of radioactive material into the hand or forearm, where it gets taken up by the lymphatic system. Specialists can then check the images for any blockages that might be driving lymphedema.
If you have sudden severe swelling, lymphedema specialists use an MRI, a CT scan, or an ultrasound to rule out other possible causes of your lymphedema symptoms, such as a possible cancer recurrence, a blood clot (deep vein thrombosis), or an infection.
Also called infrared perometry, this technique uses an infrared optical electronic scanner to calculate the volume of both arms for comparison. You place each arm into a large frame that sends infrared light beams inward from different angles. A computer uses the resulting information to calculate arm volume so the specialist can compare the two.
— Last updated on August 15, 2023 at 8:09 PM