Lymphedema is often brushed off as a minor complication of life-saving treatment for cancer. But if you are living with it, you know that lymphedema can have a major impact on your quality of life – affecting both your physical and emotional well-being. Palliative care can help.
Palliative care is specialized medical care for people living with a serious illness. It treats the pain, symptoms, and stress of the illness with a focus on improving quality of life for you and for your family. It is provided by a team of doctors, nurses, and other specialists who work together with your other doctors to give you an added layer of support. Palliative care is available at any stage of a serious illness and alongside all your other treatments.
Lymphedema refers to swelling that occurs in your arms or legs, caused by blockages in the body’s lymphatic system, which is an important part of your immune system. A blockage can prevent lymph fluid from draining well. The buildup of fluid leads to swelling. Blockages are most often the result of removal of, or damage to, lymph nodes as part of cancer treatment. There is no cure for lymphedema, and you will need life-long treatment to reduce the swelling and control your pain.
Treatments for lymphedema include exercises, physical and occupational therapy, wrapping the affected arm or leg, massage and special compression sleeves or stockings. For severe lymphedema, there are surgical options too. But if you have active cancer or other conditions like high blood pressure, diabetes, heart failure or blood clots, your choices may be more limited. Your palliative care team will help you fully understand your lymphedema and your treatment options. They will take the time to talk about what is most important to you and match all of your treatment options to your goals.
As well as swelling, lymphedema can give you a feeling of heaviness or tightness, limit how well you are able to move, cause pain, and give you infections. It can also cause your skin to harden or thicken. Although it is most common in the arms or legs, lymphedema can also affect other parts of the body. People living with lymphedema can also have trouble coping emotionally and may develop depression or anxiety. Your palliative care team will assess and treat you for all these symptoms.
Your palliative care team will also help your family. Serious illness can take a toll on families, especially if they are providing full-time care for their loved one. Your palliative care team will make sure that your family has the support they need to cope with your care.
If you are living with lymphedema that is affecting quality of life for you and your family, ask for a referral to palliative care. Palliative care is available in most hospitals, and depending on your area, in outpatient clinics and for home visits.
On GetPalliativeCare.org you can learn more, look for palliative care in the Provider Directory, and take a short quiz to see whether you might need palliative care.