Fast FAQS: How Do I Know If I Have Lymphedema?

Patient Expert

The onset of lymphedema isn't easy to pinpoint. Your arm may not look swelled at all, but it might feel a bit heavy, or full. Sometimes your skin feels tight.

Q. How can I tell if I have lymphedema? My breast area and upper arm have been a bit swollen, but I'm assuming that's just a result of the surgery I had a couple of weeks ago.

A. It's true, you'll see some swelling in your trunk and arm, especially on the affected side, for a couple of weeks after surgery. You can help bring it down by elevating your arm above the level of your heart several times a day, for about 45 minutes each time; prop it on a pillow as you're sitting in a chair, or sitting up in bed. But if, after several weeks, the swelling doesn't seem to be gradually going away, you may need some help dealing with it. Persistent swelling may be due to lymphedema. Luckily, most lymphedema doesn't develop directly after surgery; that's all you need, one more thing to worry about! Most lymphedema happens months or even years later.

Q. So OK, I had surgery 18 months ago. My arm isn't swelled up, but it feels... funny. I hate to bother the doctor with such a vague symptom, but...

A. But you should. The onset of lymphedema isn't easy to pinpoint. Your arm may not look swelled at all, but it might feel a bit heavy, or full. Sometimes your skin feels tight. Sometimes it's similar to the bloating you may have gotten with PMS, where your rings suddenly didn't fit, or a favorite bracelet felt tight. These can all be signs of lymphedema.

If the arm on your affected side doesn't feel right, somehow, try taking some measurements yourself. Take a tape measure and measure the circumference of your upper arm, about halfway between elbow and shoulder; and your forearm, about halfway between wrist and elbow. Now measure your other arm. If you see no difference (or if the affected arm is actually smaller than the unaffected), you're probably OK, though you should continue to keep an eye on it. If the affected arm measures larger than the other, then it's probably time to see the doctor. There are natural differences between the size of your two arms-the dominant arm will nearly always be a bit bigger-but it's best not to pass off possible lymphedema as "well, that's just the way it's always been."

The physical therapist I worked with gave me another good hint; if you suspect lymphedema, hold out your hands, palms up, and look at the veins in your wrist on both sides. Are the veins on the affected side much less visible? Can you see the veins in one wrist, but in the other (affected) wrist, they've disappeared? Time to see the doctor.

Q. My arm feels fine; it's my breast that feels funny, especially up under my arm. Could that be lymphedema?

A. Yup. While lymphedema most often shows itself in your arm, it can also appear anywhere on the upper quadrant of your trunk on the affected side: front, back, and under the arm. So keep an eye on those areas, too. Best way to do this is to look in the mirror and compare sides.

Q. It's been 10 years since my surgery. Can I ever stop worrying about lymphedema?

A. Unfortunately, no. It can occur for the first time years and years after surgery. Make it a point of examining yourself regularly, however you find easiest. About once a week, I slip one particular ring on and off every finger, right and left hand, comparing one hand with the other. And I look at my wrists. It's easy enough, it takes about 30 seconds, and I've been free of lymphedema for three years now... and counting.