You’ve struggled through breast cancer or another form of cancer. You’ve endured chemotherapy, radiation, and surgery. There have been tears and sleepless nights. But finally, finally, there seems to be an end in sight. So what’s with the unexplained, and very unwelcome, swelling in your limbs? Haven’t you been through enough already?
The unfortunate truth is that cancer patients have a high risk of developing lymphedema, a swelling in parts of your body that results from a damaged lymphatic system. Over time, the swollen area may become inflamed and the skin hard. Mobility in nearby joints may be reduced, and lymphedema can put you at risk for other complications.
Lymphedema is a risk for patients undergoing surgery or radiation for many types of cancer, but it is most often related to breast cancer, prostate cancer, pelvic area cancers, melanoma, head and neck cancers, and lymphoma. It most commonly affects the arms or legs, but it’s not limited to the limbs. After breast cancer treatment, lymphedema may affect the breast, chest, underarm area, and/or the arm or arms closest to the surgery area.
What’s My Risk?
If you have or have had breast cancer, your risk for lymphedema varies based partially on the type of surgery you undergo. After a lumpectomy, lymphedema risk is estimated at 0% to 3%, whereas the risk may be as high as 65% to 70% after a radial mastectomy. An article in American Journal of Clinical Oncology estimates that about 15% to 46% of breast cancer patients will experience lymphedema. Other sources estimate that up to 50% of breast cancer patients (and 100% of head and neck cancer patients) will experience post-treatment lymphedema.
The exact level of risk is debated, but we can all agree that the risk is disturbingly high.
What Is Lymphedema?
The lymphatic system is a network of nodes and lymph vessels running through your body, not unlike the circulatory system. Lymph is the fluid that travels through the system removing waste and toxins from the body’s tissues. The fluid contains proteins, salts, water, and white blood cells that help fight infection.
Lymph fluid travels through the lymph nodes where it is filtered before eventually making it back into the blood stream. There are hundreds of lymph nodes in the human body. Some are deep inside the body near the lungs and heart, and some are closer to the surface, such as those under the arm, groin, and jaw.
When the lymph system is prevented from moving fluid, that fluid builds up and causes the affected part of the body to swell. That swelling is called lymphedema, and there are two general categories of the affliction.
Primary lymphedema is rare. It is an inherited condition not caused by surgery or other cancer treatments. A few rare diseases cause people to be born with abnormalities in their lymphatic systems, and these diseases usually cause swelling in the lower extremities, but they may cause swelling in other areas as well.
Secondary lymphedema is caused by damage to the lymphatic system because of surgery, trauma, radiation, or infection. In the case of cancer surgery, damage is caused because lymph nodes and vessels near a cancerous tumor may need to be removed. This of course limits the lymphatic system’s ability to transport lymph fluid through that part of the body, and swelling may occur after fluid starts to back up. Radiation treatment can scar and inflame lymph nodes and vessels, and infection can restrict the flow of lymph fluid. Cancer itself may block lymph vessels.
Temporary vs. Chronic Lymphedema
Lymphedema may occur shortly after surgery, be mild, and go away in about a month. This is temporary lymphedema, and usually starts a month or two after surgery. Temporary lymphedema can be treated, and you should tell your doctor right away if you experience any symptoms as the efficacy of treatment is linked to how soon treatment is started.
Chronic lymphedema develops slowly and will show up months or even years after cancer treatment is completed. Symptoms range in severity and often are not noticeable at first. There is not a cure for chronic lymphedema, but early detection and intervention increase the success of treatment.
Signs and Symptoms
After cancer treatment, it’s important to be aware of the symptoms of lymphedema. It’s a good idea to be very familiar with your body and how it looks and feels so that you will notice any changes quickly. Be sure to talk to your doctor if you experience any of these symptoms:
- Feeling of fullness or heaviness in a specific part of your body
- Changes in skin color, texture, or tightness
- Aching, tingling, numbness, or pain in specific area
- Decreased flexibility or mobility in or around affected area
- Clothes or shoes fitting tightly despite not having gained weight
Lymphedema can cause infections, including cellulitis (an infection of the skin) and infections in the lymph vessels themselves. Small injuries may cause infections, and those with lymphedema should aim to prevent injuries such as cuts and scrapes as much as possible.
In extreme cases, lymphedema can cause lymphangiosarcoma, a rare form of soft tissue cancer.
Of course, the symptoms of lymphedema, especially severe swelling, pain, and reduced mobility, are serious complications in themselves.
How Can I Reduce My Risk?
A lymphedema screening should be a normal part of your post-cancer check-ups, so don’t miss those! If you haven’t been receiving a lymphedema screening and think that you may be at risk, it’s a good idea to talk to your medical team about your concerns.
Report any changes you notice early—don’t be shy! Know your body. Even getting familiar with yourself in front of a mirror can help you notice if something is different. Treatment works best when started early.
Maintain a healthy weight. It seems as if losing weight is recommended to help treat and prevent just about every ailment, and it can be exhausting to receive the same advice over and over again. But obesity increases the risk of post-cancer lymphedema and makes it harder to treat. Which brings us to our next tip…
Exercise! Using your muscles can help move your lymph fluid through your body so that it can drain properly. It also helps increase mobility, and exercise may lessen the severity of lymphedema if you are already experiencing it. Of course, talk to your doctor or therapist about exercises that will help alleviate swelling and pain, and make sure to get advice about any exercises to avoid. A good preventive exercise plan will include flexibility movements, resistance training, and aerobic exercise that encourages a healthy weight as well as deep breathing.
Avoid infections, burns, and injuries. Hopefully everyone is already avoiding these as much as possible for their own well being, but it’s even more important for those dealing with lymphedema. The body reacts to injuries and infections by sending extra fluid to the affected area, and that could worsen lymphedema symptoms. Use precaution, take good care of your skin, and use good hygiene to help avoid infection as much as possible.
Treatment And Management
Specific treatment plans will look different based on a person’s lifestyle and the severity of their symptoms. Someone with lymphedema will generally work with a lymphedema therapist to create a management and treatment plan.
Devices such as compression sleeves, bandages, and pumps may help fluid drain from the affected areas. Skin protection and exercise may be recommended as long-term lifestyle changes. Another potentially helpful treatment is manual lymphatic drainage. This is a type of therapeutic massage that can help drain lymph fluid by gently pushing it through the body. Some lymphedema therapists will teach their patients how to perform this technique at home on their own. For an instructional video on manual lymphatic drainage, click here.
There are many effective therapies and tools that can help reduce and control lymphedema, so while the disease is chronic, it is quite possible to live a full, happy life while dealing with it.
So What’s The Good News?
Awareness about lymphedema is increasing. Roughly 10 million Americans suffer from lymphedema, and people are starting to talk about it more openly. Actress Kathy Bates has spoken out about experiencing lymphedema after breast cancer, and she is now the spokesperson for the Lymphatic Education and Research Network.
Because of the pain and disfiguring swelling associated with the condition, people may be hesitant to talk to their friends or even their doctors about what they are experiencing. Please, reach out! You are not alone. Keep fighting, friends!
Katie Taylor started writing in 5th grade and hasn't stopped since. Her favorite place to pen a phrase is in front of her fireplace with a cup of tea, but she's been known to write in parking lots on the backs of old receipts if necessary. She and her husband live cozily in the Pacific Northwest enjoying rainy days and Netflix.