Expert QuoteThe best way to find a good lymphedema therapist is to ask about the therapist’s training and how many patients with lymphedema he or she has treated. You want someone who has seen a lot of cases. You can ask the person to speak with some of his or her patients.
Following these steps may be helpful in reducing risk:
Ask if you’re a candidate for sentinel lymph node biopsy (SLNB). The more underarm lymph nodes that are removed, the greater the risk of developing lymphedema later. Ask if you’re a candidate for the less invasive SLNB, which typically removes two to four of the lymph nodes, instead of the more complete axillary lymph node dissection (ALND), which takes out many. If your surgeon is not experienced with SLNB, find one who is.
Also, ask your surgeon what he or she recommends as a next step if cancer cells are present in the first one or two sentinel nodes. Standard practice has been to go ahead and remove additional nodes to keep the cancer from spreading. But research published in early 2011 found that, for some women with early-stage breast cancer, axillary lymph node dissection may not be necessary if there are only small amounts of cancer in the sentinel nodes. Radiation therapy, chemotherapy, hormonal therapy, and/or other treatments may be enough to take care of those remaining cancer cells.
Keep in mind that you may not be able to avoid having many lymph nodes removed. If the breast cancer has spread into multiple nodes, your surgeon will likely have to take them out. This reduces the risk of future recurrence or spread of the cancer — and right now that’s more important than concerns about future lymphedema.
- Ask about a newer procedure called axillary reverse mapping (ARM). ARM uses special dye to locate the lymph nodes and vessels that drain lymph from the arm and hand. The surgeon then tries to preserve those nodes and vessels as much as possible. ARM is still experimental and not widely available, but it has shown some promise in research studies. You can ask your surgeon if he/she or any colleagues are experienced with ARM and what kinds of results they have achieved. Most likely, you would need to access it by participating in a clinical trial.
- Have the circumference (distance around) both arms measured before surgery. Although lymphedema can affect the breast, chest, and underarm areas, it’s more common in the arm or hand on the same side as the breast cancer. Early swelling in the arm can be hard to notice. Ask your doctor or nurse if baseline measurements can be taken around your hands and at various points along your arms (every few inches from the wrist to elbow to upper arm), followed by regular measurements at the same points after treatment. If this service is not available, ask to be referred to a physical therapist who does offer it (see next item — this is your best bet). You also can take measurements at home using a flexible vinyl spring-loaded tape measure or a paper or plastic tape measure — the kind you might see a tailor or dressmaker use. (The stiff metal tape measure that homebuilders and remodelers use won’t give an accurate reading.) With these baseline measurements, you’ll be better able to judge any changes in your arm and hand over time. Measuring both sides is important, too, for telling the difference between weight gain, which would increase the size of both arms, and true lymphedema, which would affect one.
Schedule an appointment with a physical therapist, physical medicine doctor, or other medical professional who has been trained in, and specializes in, breast cancer rehabilitation and lymphedema management. From now on, we’ll refer to this person as your “lymphedema therapist.” (See Finding a Lymphedema Therapist for more information.) During this initial appointment, the therapist can:
- Make and record baseline measurements around your arm/hand.
- Assess the strength of your arm and upper body and ask about your current level of activity. This information will help your therapist tailor a post-surgery exercise and rehabilitation program for you. Someone who lifts weights, swims, or gets other forms of upper body exercise may be able to do more after surgery than someone who doesn’t really use her arms in any strenuous way.
- Teach you stretching and flexibility exercises for increasing your arm’s range of motion and preventing stiffness after surgery. Getting the arm moving before surgery and then resuming activity in the weeks after can help reduce the risk of lymphedema. “Learning the exercises and ways to reduce lymphedema risk before surgery is a good idea,” says Linda T. Miller, PT, DPT, CLT, clinical director of the Breast Cancer Physical Therapy Center, Ltd., in Malvern, Pa. “That way you don’t have to learn them while you’re in pain or recovering.” Your therapist can advise you on when it's safe to start stretching after surgery.
- Educate you about the signs and symptoms of lymphedema and what to do if you experience them.
- Set up a schedule of return visits for the months and years after surgery. Nicole Stout, MPT, CLT-LANA, Senior Rehabilitative Services Practice Leader at Kaiser Permanente, Mid Atlantic Region, says she generally sees patients before surgery, 1 month after surgery, every 3 months for the first year, and then every 6 months for up to 5 years after surgery. At every visit, she stresses that patients should come back sooner if they notice any symptoms.
What if you don’t have access to a lymphedema therapist?
You may find it difficult to get regular care from a lymphedema therapist, either because you can’t find one in your area or your insurance plan doesn’t cover it. If possible, try to arrange at least one appointment with a lymphedema specialist, either before or soon after your surgery. For some people, this may involve traveling to the closest large city. Although you may not be able to make regular return visits, you’ll have baseline measurements and risk-reduction advice from a professional. You’ll also have someone to consult, even if long-distance, if you develop symptoms. “Look to identify someone you can get to who knows how to manage lymphedema,” Nicole Stout says. “Then get help if the limb or other area of the body feels different, or if there’s even a little bit of swelling. If there’s a change, act on it. It’s not insignificant.”
If it’s simply impossible for you to travel or cover the costs involved, talk to your doctor or nurse about your concerns. They might be able to help you take steps to reduce and monitor your lymphedema risk, or put you in touch with a physical therapist who can.