Survivorship

Coping with lymphedema

by Lexi Harlow and Sue Frohreich, Seattle Cancer Care Alliance Physical Therapy Clinic
Frequently Asked Questions

Lymphedema is a type of swelling in a limb or any part of the body due to a disruption of the lymphatic system. It can occur as a side effect of cancer or cancer treatment.

It’s estimated that 6 percent to 45 percent of cancer survivors experience lymphedema at some point. In our physical therapy practice, up to 40 percent of cancer survivors have lymphedema to some degree. Ideally, anyone who’s had cancer should be checked for this condition.

In the cancer world, we see what’s termed ‘secondary’ lymphedema, which usually occurs after surgery in which lymph nodes or vessels are removed or damaged, or after radiation. Tumors growing within the lymphatic system can also impede or cut off flow through the system.

Typically, lymphedema isn’t painful, though the affected area may feel bruised, tense or tight. The condition can turn painful if there’s an active infection in the limb putting pressure on nerves and tissues.

Who’s at risk?

Lymphedema—which patients often just call swelling—is tough to predict because we don’t know who’s going to get it or not. A patient who has one lymph node removed during a sentinel node biopsy for breast cancer, for example, might experience lymphedema while another patient with 15 lymph nodes removed does not.

Anyone who’s had cancer has a lifelong risk of developing lymphedema. Some patients swell right after surgery, a year later or even after 10 years. In late-occurring cases, there’s usually something else like heart or circulation issues that precipitates the lymphedema. In our treatment experience, it seems the body compensates for a while but if another health problem arises or through aging, the lymphatic load can be too much.

Besides a history of cancer, risk factors for lymphedema include:

  • Anatomical differences
  • Genetics
  • Other health problems like heart or circulation issues
  • Being overweight or obese
  • Poor skin care or infection in the at-risk area

We can’t control some of these factors, but in physical therapy, we focus on the areas that  patients can control.

Getting help

Lymphedema can be complicated to treat, which is why you should go to a physical therapist who’s been certified through intensive training. There are so many variables, techniques and specialized treatments for lymphedema.

Generally, there are four components of lymphedema treatment:

  1. Manual lymphatic drainage: This specialized type of skin massage mobilizes and moves built-up fluid to areas of the body where it can be absorbed. Patients can learn to do these techniques at home in a short amount of time. Paired with compression (see #4), patients can start to see improvements immediately with this very effective intervention.
  2. Good skin care: Maintaining healthy skin through scar care, moisturizing and careful shaving is important for avoiding infections. Even a small cut or scrape can potentially lead to problems because an inefficient lymphatic system—which carries infection-killing white blood cells—means slow healing.
  3. Exercise: Some patients believe if they don’t move, they won’t swell, but the opposite is true. We move fluid by pumping our muscles, so being active is very, very important. Activities could include daily walking, basic limb movements and swimming. Precautionary steps must be taken to not aggravate lymphedema, but the benefits outweigh the risks.
  4. Compression: If limbs are swollen, they must be compressed. Special types of bandages are initially used in physical therapy to reduce swelling and then patients are fitted with a compression garment to maintain reductions. Compression is an important key for treating lymphedema.

Since predicting the occurrence or severity of lymphedema is not a straightforward science, we encourage all cancer survivors to be proactive in learning about this condition. With help, you can learn strategies to be able to manage it on your own. Such independence is our ultimate goal.

Frequently Asked Questions

Q: What is lymphedema? Who could get it?

Lymphedema is swelling in a limb or any part of the body due to disruption of the lymphatic system. The lymphatic system carries infection-killing white blood cells. If this system is disrupted it can result in slow healing or even life-threatening infections if not cared for properly.  Lymphedema can happen after surgery that removes one or more lymph nodes or after radiation therapy that includes lymph nodes.

Q: Is lymphedema curable? Will it go away?

No, lymphedema isn’t curable, but you can learn how to manage it well. If patients are committed to controlling it, they can live long, healthy lives without a problem. But you cannot ignore lymphedema. It won’t go away.

Q: How do I find a qualified physical or occupational therapist to treat my lymphedema?

When inquiring with a physical/occupational therapy office, ask, “Do you have a therapist who is certified in treating lymphedema?” Look also for the credentials “CLT” after a therapist’s name. “CLT” stands for certified lymphedema therapist.

Q: Do I have to wear a compression garment all of the time?

Generally speaking, if you have lymphedema, then yes, you need to wear some type of compression. The actual type of garment, how long you wear it, and during what activities, vary for each person. A trained lymphedema therapist can help guide your use of compression garments.

Q: Can I lift weights or exercise when I have lymphedema? Will it make it worse?

Yes, you can lift weights and exercise with lymphedema, and no, it won’t necessarily make your symptoms worse. Research shows that slow, progressive exercise does not increase the risk of getting lymphedema or worsen existing lymphedema. You should work with someone trained in exercise for people with or at risk for lymphedema. Compression garments or bandaging should be worn during exercise if you have lymphedema.

Q: Can lymphedema show up anywhere in my body?

No. The body is divided into quadrants, excluding the head & neck. So if, for instance, you have a mastectomy on the right side, that upper right quadrant (your chest, breast, arm and back on that side) are the only places you need to worry about lymphedema risk. If you see swelling in another part of your body, contact your doctor.