Women who have been treated for breast cancer may be at risk of arm, breast and chest swelling called Lymphoedema. Most women who have had breast cancer will not develop this side effect, but some will. The risk of lymphoedema is higher for women who have surgery and radiation therapy to treat breast cancer. Unfortunately there is no way to know who will get lymphoedema, but there are strategies to try to minimize the risk of it occurring. Early recognition and treatment are essential to prevent it becoming disabling and control things thereafter.
Our bodies have a network of lymph nodes and lymph vessels that collect and carry watery, clear lymph fluid, much like veins collect blood from all parts of the body and carry it through the body. Lymph fluid contains proteins, salts and water, as well as white blood cells, which help fight infections. In the lymph vessels, valves work with body muscles to help move the fluid through the body. Lymph nodes are small collections of tissue that work as filters for harmful substances and help us fight infection.
During surgery for breast cancer, usually lymph nodes are removed from the underarm area (axilla) to check if the cancer has spread and less often to treat any that are affected (see lymph node page ). When lymph nodes are removed, some of the lymph vessels that carry fluid through the nodes from the breast/chest wall and arm to the rest of the body are disrupted or removed too.
Removing lymph nodes and vessels changes the flow of lymph fluid in that side of the upper body. This makes it harder for fluid in the chest, breast, and arm to flow out of this area.
If the remaining lymph vessels cannot drain enough fluid from these areas, the excess fluid builds up and causes swelling, or lymphoedema. Over time new connections develop and other lymph channels are recruited so that drainage usually improves.
Radiation treatment to the lymph nodes in the underarm can affect the flow of lymph fluid in the arm, chest and breast area in the same way, further increasing the risk of lymphoedema.
Lymphoedema is a build-up of lymph fluid in the fatty tissues just under your skin. It usually develops slowly over time. The swelling can range from mild to severe. It can start soon after surgery or radiation treatment. It can also begin months or even many years later.
Women who have many lymph nodes removed and women who have had radiation therapy for breast cancer have a higher risk of getting lymphoedema.
No one fully understands why some patients are more likely to have problems with fluid build-up than others.
Every effort is made by your breast surgeon to reduce your risk of developing lymphoedema as much as possible.
In recent years, for the majority of patients, lymph node surgery has become far less extensive than it used to be. Better tests before surgery are now very reliable at finding cancerous spread in lymph nodes beforehand. Pre-operative lymph node tests are usually clear, so instead of having a full lymph gland clearance, most women will only have a sentinel lymph node biopsy, usually of only 1 or 2 nodes.
Intra-operative testing of the sentinel lymph nodes (eg OSNA ) will reveal any ‘involved’ nodes, so that those women who need further nodes removed can have this done during the same operation. Research suggests that if a patient has to wait and have a second operation a few weeks later, then there may be an increased risk of lymphoedema.
New research evidence (including results of the Z0011 Trial & The Appropriate Extent of Surgery for Early Stage Breast Cancer ) has suggested that there may be certain situations where there is no significant benefit from removing further lymph nodes even if the sentinel nodes are involved. Your specialist will discuss whether this applies to you or not.
Your breast team should discuss your own individual risk of lymph node involvement with you at the time of diagnosis. They will help you to decide the minimum amount of lymph node surgery that you should have that will the best information and treatment for your cancer. Clearly the less surgery needed the lower the risk of lymphoedema, although this has to be balanced against the risk of leaving cancer undiscovered or untreated.
The first 6-12 weeks:
Immediately after surgery, the incision in the breast and underarm area may swell. This swelling is usually short-term and slowly goes away over the next 6 to 12 weeks. Some women also have early swelling in the affected arm, which may go away on its own although many would advocate starting to treat it right away.
Every patient should be aware of exercises that may help in the early weeks. Your breast care nurse will be able to advise you and help supervise these:
If you have radiation therapy after surgery then early swelling may last longer than normal. Radiation may also cause some swelling in the chest and breast toward the end of the treatment. In most cases, this swelling is short-term and will slowly go away. During treatment and up to 18 months afterward, you should do simple stretching exercises each day to keep full movement in your chest, arm, and shoulder.
NB: Finding lymphoedema early will help to gain control more quickly and hopefully reduce the risks of a long term problem…. so if you notice tingling or strange sensations in your arm after surgery, talk with your doctor, even if you haven’t noticed swelling.
At this time, there are no scientific studies to show that women can prevent lymphoedema. Still, most experts say following these basic guidelines might lower your risk of lymphoedema or delay its onset:
1. Try To Avoid Infection. Your body responds to infection by sending extra fluid and white blood cells to fight the infection. If lymph nodes and vessels are missing or damaged, it is harder for the body to move this extra fluid, which can trigger lymphoedema. Good hygiene and careful skin care may reduce the risk of lymphoedema by helping you avoid infections. Follow these tips to help you care for the hand and arm on the side of your body that had surgery:
2. Try To Avoid Extreme Cold. As you warm up, it can cause rebound swelling and chapping of your skin, which may lead to infection.
3.Try To Avoid Burns. Like infections, burns can cause extra fluid to build up and cause swelling when lymph nodes have been removed or damaged. Protect your chest, shoulder, and arm from sunburn. Use sunscreen labeled SPF 15 or higher, and try to stay out of the sun between the hours of 10 a.m. and 4 p.m., when the ultraviolet rays are strongest.
4.Try To Avoid Constriction. Constriction or squeezing of the arm may increase the pressure in nearby blood vessels. This may lead to increased fluid and swelling (much like water building up behind a dam). Some women have linked this with the start of lymphoedema. Wear loose jewelry, clothing, and gloves. Avoid anything that forms a snug band around your arm or wrist.
In particular: Have your blood pressure taken on the unaffected arm. If both arms are affected, blood pressure can be taken on your thigh.
5. Try To Avoid Gaining Weight. Extra fat requires more blood vessels. This means more fluid in the arms and chest, and places a greater burden on the lymph vessels that are left. Some studies have found that gaining weight after mastectomy is linked to a higher risk of lymphoedema. Women who are more overweight (obese) are more likely to have severe lymphoedema.
On long or frequent airplane flights: wear a compression sleeve. A well-fitted compression sleeve may help prevent swelling. But careful fitting is required, since any garment that is too tight near the top can actually reduce the lymph flow. Ask your doctor or physical therapist if you should be fitted for a sleeve to wear during air travel. You may also want to discuss ways to safely raise your arm above the level of your heart and exercise it during long flights.
Try to avoid muscle strain. It’s important to use your affected arm for normal, everyday activities to help you heal properly and regain strength. This includes doing things like brushing your hair and bathing. Using your muscles also helps drain lymph fluid from your arms. If you’ve had surgery or radiation treatment, ask your doctor or nurse when you can start to exercise and what type of exercises you can do. But keep in mind that overuse, which can result in injury, has been linked with the start of lymphoedema in some women. It’s a good idea to follow these tips:
Early on, the skin usually stays soft and the swelling may be relieved by raising the affected arm. But over time, the swollen area may become hot and red and the skin hard and stiff. If you have had any type of breast surgery, lymph nodes removed, or radiation treatment, look at your upper body in front of a mirror. Compare both sides of your body and look for changes in size, shape, or skin color.
If you are diagnosed with lymphoedema, there are treatments to reduce the swelling, keep it from getting worse, and decrease the risk of infection. The treatment is prescribed by your doctor and should be given by an experienced therapist.
Mild Lymphoedema should be assessed and treated by a breast care nurse who has gone through special training.
Moderate or Severe Lymphoedema is most often treated by a therapist with special training and expertise who will help you with:
Complex Decongestive Therapy or CDT. This involves some or all of the following: measurement and assessment followed by skin care, massage, special bandaging, exercises, and fitting for a compression sleeve.
Manual Lymphatic Drainage or MLD, is a type of massage used along with skin care, compression therapy, and exercise to manage lymphoedema.
The therapist will also teach you things like how to care for the lymphoedema at home and how and when to wear the compression sleeve.
Diet: Taking care of your whole body is important. Eat well and get to and stay at a healthy weight. Try to eat more servings of vegetables and fruits each day (about 21⁄2 cups total). Choose wholegrain foods instead of white flour and sugars. Cut back on red meats and processed meats like hot dogs, bologna, and bacon. If you drink alcohol, limit yourself to 1 drink a day.
General Fitness: Don’t forget to get some type of regular exercise. Try to get at least 150 minutes of moderate-intensity or 75 minutes of vigorous activity per week, preferably spread throughout the week.
A good diet and regular exercise can help you stay at a healthy weight and give you more energy. Try to reduce the stress in your life and get enough sleep, too.
Support: You also need people you can turn to for strength and comfort. Support can come in many forms: family, friends, cancer support groups, places of worship or spiritual groups, online support communities, or one-on-one counselors. You may want to get support from others with lymphoedema. Local Patient Support Groups and National Associations will be able to help with expert first-hand advice from people who understand what you’re going through.
For more information about specific lymphoedma care in Cornwall, please contact the Breast Care Nurse Team who will be able to advise and liase with the Specialist Lymphoedema Services
Specialist Lymphoedema Services
Barbara Langford - Clinical Nurse Specialist in Lymphoedema
Mount Edgcumbe Hospice, Porthpean Road, St Austell. PL26 6AB
Tel: 01726 65711
Emma Underwood, Christopher Jones- Occupational & Specialist Lymphoedema Therapists and Trustees British Lymphology Society
Dept of Occupational Therapy, Royal Cornwall Hospitals NHS Trust, Treliske, Truro. TR1 3LJ
Tel: 01872 25 2714
Further Lymphoedema Information: