Just as with breast cancer, detecting lymphedema early increases the likelihood of successful treatment. Early detection can be challenging, though, because first symptoms are often subtle. A change of just 2 centimeters (cm) — or about 3/4 inch — in the circumference of the arm can suggest lymphedema is developing, but you may not notice this change.
You also may feel a change in the arm or upper body before you see anything, says Nicole Stout, MPT, CLT-LANA, Senior Rehabilitative Services Practice Leader at Kaiser Permanente, Mid Atlantic Region. “Even before there is visible swelling, patients often report an unusual sensation — a sensory change. They may feel tingling or numbing in their arm for a day or two, but it goes away. Then it happens again and goes away. And then a week goes by and they notice their rings don’t fit. That feeling is an important part of the story the body is telling: Something is changing, something is different. And it’s important for women to act on it. If we intervene early, we often can use conservative treatments and prevent lymphedema from becoming a persistent, limiting condition.”
If you’re working with a doctor or a physical therapist who isn’t experienced with lymphedema, he/she may tend to downplay your symptoms, especially if they seem fairly minor. You know your own body best. If you think there’s reason to be concerned, find your way to someone with the appropriate training and expertise to diagnose lymphedema.
Symptoms to look for include:
- achiness, tingling, discomfort, or increased warmth in the hand, arm, chest, breast, or underarm areas
- feelings of fullness or heaviness in the hand, arm, chest, breast, or underarm
- tightness or decreased flexibility in nearby joints, such as the shoulder, hand, or wrist
- “bursting” or “shooting” pain sensations, or pins and needles
- tenderness in the elbow
- slight puffiness or swelling in your arm, hand, chest, or breast, with a temporary indentation of the skin when you press on it with your finger (this is called pitting edema)
- veins or tendons in the hand are harder to see, and/or the knuckles look less pronounced, or once-wrinkled skin looks younger or smoother
- trouble fitting the arm into a jacket or shirt sleeve that fit well before
- bra feels tighter, does not fit the same, or leaves an indentation on the skin
- noticing that the two sides of the back look different in size (asymmetrical)
- difficulty getting watches, rings, or bracelets on and off
- changes in skin texture or appearance, such as tightness, redness, or hardening
- rash, itching, redness, pain, or warmth of the skin
- fever or flu-like symptoms
See your doctor if you experience any of these symptoms, even if they go away on their own. As Nicole Stout points out, “There is no such thing as a little bit of swelling.”
Even without visible changes to the skin, symptoms such as fever, fatigue, or generally not feeling well could be a sign of infection and also should be checked out.
It’s never a good idea to wait out the symptoms to see if they get worse. The more time passes, the more likely it is that lymph will build up in the tissue. Once this happens, lymphedema can cause lasting damage, including changes in the appearance of the limb and the skin. Treating it is likely to take more of your time and energy than it would if you get help at the first sign of trouble.
Sudden swelling: Lymphedema usually happens gradually. However, some women have reported that their swelling came on suddenly. If you ever experience sudden severe swelling — meaning that your hand, arm, or other body part seems to “blow up” to a larger size within a day or two — see your doctor right away. It could mean that you have an infection, a blood clot (also known as deep vein thrombosis), or a recurrence of the cancer that is affecting the lymphatic system.