Lymphoedema is a chronic disease characterised by massive swelling of limbs or tissues. The disease affects about 250 million patients worldwide. [1]
It happens when there is an excessive collection of fluid in the leg, trunk or body part, due to disruption of the normal lymph flow. This condition usually affects an arm or a leg, but it can also affect other parts of the body.
The disruption is mainly caused by the removal of the lymph nodes during surgery and/or radiotherapy for cancer treatment. If you have undergone surgical removal of lymph nodes or radiotherapy, you may be at risk of developing lymphoedema. [2]
When left untreated, this disorder can lead to many other complications.
Veronica Yap, a certified lymphoedema therapist with more than 20 years of experience, hosted an AMA session on Human recently. She answered plenty of reader questions related to lymphoedema. Here's what she shared.
What causes lymphoedema?
Veronica explains that there are two main types of lymphoedema triggers.
One is called primary lymphoedema which has a genetic inheritance, the other is called secondary lymphoedema which is caused by accident, injury, surgery, or diseases to the lymphatic system.
Is primary lymphoedema hereditary?
If a family member has been diagnosed with having genetic lymphoedema, there's a higher chance that you might get diagnosed as well. [3]
Primary lymphoedema may be caused by mutations in some of the genes involved in the development of the lymphatic system.
However, having said that, Veronica noted that while she suffers from genetic lymphoedema issues, she does not have any family member who suffers from the same condition. Similarly, many of her primary lymphoedema patients are isolated cases in their own families.
Trauma and surgery can cause secondary lymphoedema
Woman receiving radiation therapy medical treatment for cancer
Secondary lymphoedema is caused by damage to the lymphatic system. It can develop in people who experienced trauma from an accident, infection or have undergone surgery, radiotherapy for cancer.
There is a close connection between breast cancer and lymphoedema
According to Veronica, her referrals usually come from breast cancer patients. More than 50% of her post-cancer lymphoedema cases are breast cancer patients and either involve chest, back, or arm swelling.
Local statistics in Singapore are not readily available on the incidence of lymphoedema. Although international studies report an estimated incidence of 16.6–41.1% for breast cancer patients. [5]
There is no cure for lymphoedema
Unfortunately, damage to the lymph system cannot be repaired. However, there are various treatments that can control the swelling caused by lymphoedema and keep other problems from developing or worsening. [4]
Early stages of lymphoedema are preventable
Veronica emphasised that established lymphoedema is highly preventable and treatable at the initial stage of swelling. This can occur anytime after surgery.
At this stage, if you're equipped with the skills to monitor and manage your condition, you'll have a very good chance of preventing it from worsening. This helps you to lead an almost normal life.
At stage 2, you'll require a lifetime of constant management
If your condition has passed the latent stage (stage 1) and moved into stage 2 (where your limb is swollen and feels spongy), you'd have to seek help from both the physiotherapist and occupational therapist for co-management of lymphoedema. [4]
The condition needs constant care and management with compression garments and bandaging as well as proper supervision.
The later stages of lymphoedema can be debilitating
If left unchecked, your affected limbs will harden and become heavier. You constantly experience flu-like symptoms, fatigue, and get repeated infections.
At stage 3 and 4, your mobility and sensation will be very affected. For this reason, Veronica emphasises on early detection and early management for better quality of life and improved well-being.
Lower body lymphoedema cases are often more complex
More complex lymphoedema cases usually stem from lower body cases in pelvic cancer patients. Latest studies show a much higher risk for lower body cases than upper body cases.
Veronica suggests that patients get referred for some form of prevention awareness program soon after their treatment.
There is no standard cost for lymphoedema therapy in Singapore
Prices range from those of private hospitals and clinics to the heavily subsidised services found at public hospitals.
Veronica estimates the average cost for each session with private therapists at about $120 - $200. Of course, there are other factors to consider such as the costs of material and therapist expertise.
Lymphoedema can be an expensive problem to manage
From compression garments to regular therapy sessions, Veronica admits that lymphoedema is an expensive problem to manage.
To help her patients better manage the high costs, she teaches them to learn how to do home care. Some of her patients achieve such excellent self-management that I can see them once in 3 months.
Massages can help with lymphoedema
A therapist treating a patient who has lymphoedema
The right kind of massage can be very useful for lymphoedema. It helps to break down proteins and fibrosis. However, it's important to ensure that the type of massage performed shouldn't turn the skin red or create bruises.
Of course, lymphoedema is a skin-deep problem and not muscle deep, so increasing circulation is only helpful for vein issues and not lymph issues.
You can hit the gym as long as you take precautions
Previously, doctors warned patients about lifting heavy weights or doing strenuous exercises. However, subsequently, it was discovered that patients who don't exercise experience more lymphatic problems.
Veronica encourages all her patients to exercise but they have to make sure their muscles are well conditioned. Working with a personal trainer who knows about your condition's triggers and limitations may be a good idea.
Be extra careful during long travels
Veronica emphasises the importance of good effective compression garments made and fitted prior to your flight or prolong bus journey. You can do self-bandaging before travelling and only remove them when you have arrived at your hotel/home.
Flight pressure and prolong stagnant position causes swelling to get worse, so you should walk around a bit and stretch as often as you can.
She also highlights that you should schedule extra time in your itinerary to rest and manage post-flight swelling. She doesn't recommend a hectic and rushed schedule because it can negatively affect your lymphatic system if your body is stressed and hurried.
Lymphoedema doesn't directly cause death
No deaths have been linked directly to lymphoedema so far, but it can definitely create opportunities for cellulitis (multiple infections, not to be confused with lumpy, fatty deposits) to develop and in turn, weaken your body as a whole as well as expose you to other serious problems.
How can I find out if I am at risk?
If you're concerned, you can get a therapist to do a risk assessment for you. If the result shows that you have very few lymph nodes affected, your risk is very very low.
Conclusion
Early detection and management are vital parts of helping to ensure that lymphoedema is easier to live with. With the right care and guidance, the condition can be managed to a point where your quality of life is hardly compromised.
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