Lymphedema is a challenging condition that can arise following some prostate cancer treatments, as a result of damage to the lymph system. Understanding the symptoms, early diagnosis and treatment, and active participation in your management are important steps to minimize its effects on your quality of life.
What is lymphedema?
Lymphedema is a buildup of fluid in body tissues leading to swelling, which occurs when the lymph system has been damaged or blocked. The lymph system plays a role in immunity and in circulating body fluids. Lymph nodes produce white blood cells to help fight infection; the lymph vessels transport these cells and help the veins return fluid and waste products from muscle metabolism, large protein molecules, and foreign substances from all parts of the body. Radical prostatectomy, lymph node removal or radiation therapy to the pelvis can damage the system. In addition, cancer itself can block the vessels and lead to lymphedema. After treatment for prostate cancer, lymphedema can occur in the lower part of the trunk, the genitals and/or the legs.
What does lymphedema feel like?
Postoperative swelling often resolves spontaneously; if it persists, lymphedema may be suspected. The swollen limb or body part may feel uncomfortable, painful, and heavy or awkward to move. There may be a feeling of fullness or tightness in the leg or genitals. The ankle or knee may feel stiff and less flexible. Genital edema can interfere with sitting or walking, and urination can be difficult.
Body image, as well as social, family and work life can be affected. Especially for men with scrotal or penile swelling, psychological distress is as important a factor as the physical discomfort. With foot and leg swelling, finding appropriate shoes and trousers can present a challenge.
What should I look out for?
If your cancer treatment was aggressive to the lymph system, or if you have developed mild swelling, it is wise to follow certain precautions:
- Protect the limb and trunk from infections, injury or burns and maintain a normal weight as much as possible. Being overweight or getting an infection (cellulitis) in the skin of the treated area increases the risk of lymphedema. The body responds to injury by making extra fluid that is hard to get rid of if the lymph drainage system is compromised. If injury occurs, clean the area immediately and apply standard first aid.
- Skin care is important, because the affected tissues gradually thicken and are susceptible to inflammation and infections. Keep the skin clean, soft and supple by using lotion or oils as needed. Dry skin tends to crack more easily, creating an entry point for infection. Avoid fungal infections by keeping the skin between the toes dry and soft.
- Be aware of the signs of infection: heat, redness, swelling, tenderness, fever or chills. Cellulitis needs prompt treatment. Call your doctor right away or seek treatment if you think you have an infection, so you can get the proper antibiotics immediately.
- Deep vein thrombosis (DVT) is also a potential risk following cancer surgery. With DVT there may be symptoms of pain, redness, heat and swelling. It is best to check with your doctor when any symptoms of swelling occur.
- Other precautions to protect the skin and avoid injury include using sunscreen and insect repellent when outdoors in summer, avoiding extreme temperatures such as hot tubs that can increase swelling, wearing comfortable socks and shoes, and wearing loose clothing to avoid constriction of the limb or trunk.
- Regular exercise, such as walking and swimming, maintains strength and flexibility and helps reduce swelling and stiffness associated with treatment and/or lymphedema. Check with a doctor or exercise specialist before beginning any new program, to ensure it is appropriate for your health and fitness level. When exercising, intensify your program gradually; listen to your body and avoid overexertion, swelling or discomfort.
Treatment
The aims of treatment are to reduce and control swelling and to encourage you to be an active participant in your own management. Health professionals (including nurses, physiotherapists, occupational therapists, massage therapists) with special training in Complex Decongestive Therapy (CDT) can offer assessment, education and treatment. The mainstay of treatment is compression. For mild lymphedema, wearing a compression stocking and/or bicycle shorts may be enough. If it is more serious, the therapist may perform a special, light type of massage called manual lymph drainage and will often teach you how to do it yourself. This gentle massage encourages lymph flow and moves the excess fluid from the swollen part to an area where the lymph system still functions normally. This may be followed by the application of compression bandages that are worn day and night in the intensive, first phase of treatment.
In the second, maintenance phase, CDT therapists will educate you about proper exercise, skin care, and long-term management with compression garments or different types of devices (special scrotal pouches, nighttime compression garments, etc.) and self-drainage techniques as necessary. Together, you and your therapist will find what works best for you. If you suspect you have lymphedema, seek prompt assessment and diagnosis; early treatment leads to best results.
Where can I find help?
Lymphedema support groups in many provinces of Canada provide education, links to therapists and patient support (see Resources table below). Lymphovenous Canada has also developed an informal network of contacts where support groups do not yet exist. The National Lymphedema Network and Cancer Supportive Care in the US, and Cancerbackup in the UK are among many informative websites offering patient-friendly information.
The most specific site on lymphedema following prostate cancer treatment (www.hrpca.org/lymphedema.htm) is hosted by an enterprising patient with hormone refractory prostate cancer. I met Howard Hansen in Vermont, and was most impressed by his positive and generous approach to lymphedema and to life. We know how important it is to maintain an optimistic attitude throughout cancer diagnosis and treatment. It is the same with lymphedema. Symptoms and swelling can vary with changes in weather, diet, exercise, etc. Lymphedema is a very individual condition — the challenge is to find what works for you and to keep a positive outlook. Family, friends and a supportive therapist can all help. Fortunately, there are many more resources today than even 10 years ago, thanks in large part to the advocacy of patients and patient support groups.
Pamela M. Hodgson, MSc, RMT, is a certified lymphedema therapist and Research Associate for the Interdisciplinary Lymphedema Program at the McGill University Health Centre
