Preventing and Managing Lymphedema

One sentence from the National Cancer Institute shapes this page: "Although lymphedema cannot be prevented, there are ways to lower your risk or keep lymphedema from getting worse." And if swelling does start, NCI adds that "once lymphedema develops, it is a chronic condition that cannot be cured but can be treated."

That is a narrower promise than most risk-reduction lists suggest. It is worth saying plainly. People who did everything right and still swelled often assume they made a mistake. NCI's wording says otherwise.

NCI publishes its risk-lowering steps as a single list. It does not rank them. It does not say how much any one lowers your risk. MedlinePlus publishes nearly the same list under the heading "Lymphedema - self-care," which is written for people who already have swelling. So these habits sit somewhere between sensible protection and proven prevention. The federal sources do not claim more than that. Follow them because the cost is low, not because the list is a guarantee.

Broken skin lets bacteria into a limb that drains poorly. NCI's instructions are specific. Wear gloves when cooking and gardening, to protect your hands from injury. Use lotion to prevent dry skin and cracks where bacteria can enter. If you get a burn or cut, ask your doctor about an antibacterial ointment to use.

MedlinePlus adds detail:

• Use an electric razor rather than a blade.
• Wear gloves for household work.
• Use sunscreen with SPF 30 or higher, and insect repellent, outdoors.
• Cut toenails straight across.
• Keep your feet covered rather than going barefoot.

For a cut, wash gently with soap and water, apply antibiotic cream, and cover with gauze that is not tight. For a burn, apply a cold pack or cold water for 15 minutes. Then wash gently and bandage.

NCI advises avoiding pressure on the affected area. Wear loose jewelry, and clothes without tight bands or elastic. Do not carry handbags or other items with an affected arm. Have blood pressure and blood draws taken using the arm without lymphedema. MedlinePlus adds that blood draws, IV therapy, and shots should go in the non-affected arm, or another part of your body. It also suggests not sitting in one position for more than 30 minutes, and not crossing your legs. Avoid tight rings, waistbands, cuffs, and bras.

NCI describes exercise as "a natural pump for the lymph system." It can improve the flow of lymph fluid. It may help treat lymphedema, and "may also help lower your risk." NCI's instruction is to talk with your doctor, to find a program that you enjoy and that is safe for you. The American Cancer Society writes about arm exercises after lymph node surgery, and is blunter. Do not start any of these exercises without talking to your doctor first. ACS notes those exercises matter after radiation, which may affect your arm and shoulder long after treatment is finished.

NCI also advises staying at or getting to a healthy weight. It says that can keep lymphedema under control.

Avoid extreme heat and sun, since high temperatures can make lymphedema worse. Use sunscreen, hats, and lightweight long-sleeved shirts. Skip ice packs, heating pads, hot tubs, and saunas on the affected limb. Drink plenty of water to keep lymph fluid moving. And reduce salt. Salt makes swelling worse by causing your body to retain fluid.

NCI advises wearing compression garments daily when you are up and moving around. Wear them at night too, if your certified lymphedema therapist tells you to. Fit is not a do-it-yourself job. Your nurse or therapist will help you find garments that fit properly. MedlinePlus describes a sleeve worn during the day, removed at night, and worn during air travel.

MedlinePlus suggests resting the arm above heart level two or three times a day, for about 45 minutes while lying down. Open and close your hand 15 to 25 times while you do. Elevate a leg on a pillow or rolled-up blankets.

MedlinePlus lists these reasons to contact your provider:

• new rashes or skin breaks that do not heal
• feelings of tightness in your arm or leg
• rings or shoes that become tighter
• weakness in your arm or leg
• pain, aching, or heaviness in the arm or leg
• swelling that lasts longer than 1 to 2 weeks
• signs of infection, such as redness, swelling, or fever of 100.4°F (38°C) or higher

Other sources word the fever threshold slightly differently, so use the number your own team gave you.

NCI is more urgent about infection specifically: "If you have a fever or other signs of cellulitis, call your doctor right away." And: "Always call your doctor if you notice redness or other signs of infection."

A limb that drains poorly can turn a small skin infection into cellulitis, and cellulitis can turn into sepsis. So one part of this list is faster than the rest.

Call 911 or go to an emergency department if the redness is spreading while you watch it, the limb is hot and very painful, or you feel shivery and unwell with it — above all if you are also confused, breathing fast, dizzy, or your skin is clammy and mottled. NHS guidance on sepsis treats those combined signs as an emergency. Say the words "I have lymphedema" when you arrive.

Call your care team the same day if you have new redness, warmth, or a fever, and none of the emergency signs above. Cellulitis is treated with antibiotics, and starting them early is the point.

If you are having chemotherapy, treat any fever as an emergency instead. CDC gives that instruction directly. Telephone your cancer team as soon as the reading reaches 100.4°F (38°C) whatever the hour, and go to an emergency department if nobody answers quickly.

Call your care team within a day or two if the swelling is creeping up, garments stop fitting, or the limb aches more than it used to.

• National Cancer Institute, Lymphedema (PDQ) - Patient Version: https://www.cancer.gov/about-cancer/treatment/side-effects/lymphedema/lymphedema-pdq
• MedlinePlus (U.S. National Library of Medicine), Lymphedema - self-care: https://medlineplus.gov/ency/patientinstructions/000045.htm
• American Cancer Society, Exercises After Breast Cancer Surgery: https://www.cancer.org/cancer/types/breast-cancer/treatment/surgery-for-breast-cancer/exercises-after-breast-cancer-surgery.html
• NHS, Sepsis: https://www.nhs.uk/conditions/sepsis/