If you’ve had lymph node surgery and/or radiation therapy, you’re considered to be at some risk for lymphedema. How high your risk is depends on whether you have any other risk factors for the condition, outlined below. Some lymphedema risk factors are under your control and others aren’t — but knowing about them can help you gauge your risk level. You can talk about your situation with a physician, nurse, or therapist who specializes in breast cancer recovery and lymphedema management.
If there’s every reason to believe you are low risk, that’s good news! But it also doesn’t mean you are “zero risk.” You’ll still want to take precautions for avoiding lymphedema and get help quickly if you notice any signs or symptoms. If you have multiple risk factors, these actions become even more critical.
“In the treatment community, we’re talking more about the importance of developing a risk profile for every patient,” says Nicole Stout, MPT, CLT-LANA, Senior Rehabilitative Services Practice Leader at Kaiser Permanente, Mid Atlantic Region. “We must identify women at high risk and monitor them a little more closely for signs and symptoms and complications of lymphedema. But we also have to realize there will always be those ‘outliers’ who appear to be low risk but still develop lymphedema.”
Risk factors for lymphedema include:
Having more lymph nodes removed: Research shows that having more underarm lymph nodes removed increases lymphedema risk. Axillary lymph node dissection (ALND), the procedure that removes many or most of the nodes (typically anywhere from 5 to 30), is associated with higher risk than sentinel lymph node biopsy (SLNB).
According to the National Cancer Institute, anywhere from 5-17% of women who have SLNB develop lymphedema. Among women who have ALND, the percentage is higher — from 20-53% — and risk increases with the number of nodes taken out. Whether you had SLNB or ALND, be sure to ask your surgeon how many lymph nodes you had removed, as this varies from person to person.
Having more lymph nodes removed also increases the risk of post-surgical complications such as infection (see last bullet below) and seromas. A seroma is the build up of clear bodily fluids in any of the areas affected by surgery, such as the chest and underarm. Some seromas resolve on their own, while others need to be drained using a needle. One study published in 2011 found that women with seromas requiring treatment had a higher risk of developing lymphedema.
Having multiple surgeries to the chest, or more extensive surgery: It’s thought that the more surgical procedures you’ve had to the chest — whether to treat the breast cancer or some other unrelated condition, or to reconstruct the breast — the greater the chance of disruption to the lymphatic system and the greater the lymphedema risk. Mastectomy, because it’s a more extensive surgery, is also associated with greater risk than lumpectomy.
The jury is still out on whether breast reconstruction can increase lymphedema risk, though. Some recent studies have not shown a connection between breast reconstruction and lymphedema risk. Some clinicians have found that their patients who undergo reconstruction are not at any greater risk of lymphedema than those who do not. Nicole Stout, MPT, CLT-LANA, says that simply being aware of possible risk while undergoing reconstruction and being watched by an experienced lymphedema therapist is your best bet: “I would never deter a woman from having reconstruction because of concerns about lymphedema risk. But any time there is an inflammatory response, as there is with surgery, there is a risk of fluid load that leads to lymphedema. I follow my patients closely as they go through reconstruction, and if I see any problems developing, I can start some compression or bandaging.”
- Radiation therapy: The greater the area of the chest and/or underarm that needs to be treated with radiation, the greater the risk. Radiation directly to the underarm area, where lymph nodes are clustered, tends to be associated with the highest risk.
Chemotherapy: Research has not yet determined whether chemotherapy itself increases lymphedema risk. However, we know that chemotherapy sometimes leads to weight gain, which is a risk factor. Many women who have chemotherapy also take steroids — a common example being dexamethasone (brand name: Decadron) — to help with side effects, and these can contribute to weight gain. Chemotherapy also can lead to weight gain as a result of hormonal changes, such as temporary or permanent menopause (cessation of menstrual periods) and/or fatigue that makes it hard to stay active.
If you're having intravenous chemotherapy in the arm, make sure that you ask that treatments be given on the opposite side of your body (not on the surgery side). Any breaks in the skin can increase lymphedema risk. If you had lymph nodes removed on both sides, ask about alternative areas to receive chemo, such a a chest port.
Being overweight or obese: People who are overweight or obese are more likely to develop lymphedema after breast cancer treatment. Overweight is defined as a body mass index (BMI) of 25-29.9, obese as a BMI of 30 or greater. For example, a 5’5” woman weighing 150 pounds or more is considered overweight and obese at 180 pounds or more. There are online tools you can use to calculate your BMI, such as this one from the National Institutes of Health.
When your body has extra fat, that fat tissue requires more blood vessels to bring it oxygen and nutrients. As a result, any areas of the body with extra fat also have more fluid to get rid of. If your lymphatic system can’t handle the amount of fluid coming out of your arms or upper body, lymphedema can result.
Infection or injury affecting the arm, hand, or upper body on the same side of the body as your surgery: Infection and injury can lead to inflammation of the body’s tissues, which in turn makes the lymphatic system work harder. When an area of the body is inflamed, blood flow increases and so does fluid load. (Think of a sprained wrist that is red and swollen, or an infected cut where pus forms.) If your lymphatic system can’t keep up, this can trigger lymphedema.
Sometimes infection happens right after surgery at the site of the incision(s). Later on, infection can result from a cut, bug bite, needle stick, or cracking of the skin — anything that lets bacteria find their way into the body. Injury can result from suddenly lifting something too heavy, such as a bag of groceries, gallon of milk, or small child. A trainer or therapist specializing in lymphedema can help you strengthen your arm gradually, so it can handle lifting heavier loads after surgery (see the Reducing Risk of Lymphedema section).
What about airplane travel? There are differing opinions about whether or not airplane travel increases risk. Air pressure is lower at high altitudes. Even though airplane cabins are pressurized for our comfort and safety, the pressure is still lower than it is on the ground. The theory is that less pressure on the upper body and limbs could slow down the flow of lymph, leading to an increased risk of pooling in the tissues, especially during long flights. Another possible factor is the many changes in pressure that people experience when they have two or three connecting flights.
Some lymphedema therapists recommend wearing a light, well-fitted compression sleeve (an elasticized sleeve fitted to the arm) to maintain pressure on the arm during air travel. Research suggests that airplane flight itself is unlikely to trigger lymphedema in people who are considered low risk and haven’t had any symptoms. Some therapists feel that for these individuals, wearing a compression sleeve as a precaution could do more harm than good. But if you have many risk factors or you've had even subtle symptoms, a light compression sleeve may be a good idea.
If you’re planning airplane travel, talk to your lymphedema therapist. If a sleeve is recommended as a precaution, have it properly fitted by an expert. It’s never a good idea to buy a sleeve online or at a medical supply store and use it on your own. Proper fitting ensures that the sleeve will work as it’s supposed to, helping the lymph to move up and out of the arm and hand. Otherwise, the sleeve could be too tight in certain places, which can restrict the flow of lymph and make things worse.
Also, beware of other travel-related risk factors. Be careful not to lift very heavy suitcases: If you’re traveling alone, have someone assist with your luggage at the airport, check it for the flight (instead of carrying it on), and get help at your destination, too. Get out of your seat and move your arm from time to time. Keeping your arm and upper body in one position for too long could slow down the outflow of lymph.