Updated: Sep 7
The journey to diagnosis of Lymphoedema can be a long, painful, and drawn out process. The condition is still not fully understood across the entire medical sector which can make your search for a diagnosis both difficult and isolating. In this article we hope to provide clarity by outlining some of the symptoms typically experienced by those with lymphoedema.
Lymphoedema is swelling that develops because of a build-up of lymph fluid in the body’s tissues. The lymphatic system usually drains the fluid away. Lymphoedema happens when the lymphatic system is not working properly, or if it is damaged by cancer or cancer treatment.
Lymphoedema can develop months or even years after cancer treatment. It can happen anywhere in the body, but the most common places for lymphoedema to develop are in the arm or leg.
Not all swelling is lymphoedema. Something else, like a blood clot, could be causing the swelling. You might need to have tests to find out what is causing it or requires scans, to see whether a cancer affecting the lymph nodes is causing the lymphoedema.
It is not possible to repair the lymphatic system once it has been damaged. So lymphoedema does not completely go away with treatment. This is known as a chronic condition. But it is usually possible to reduce and control the swelling.
If the swelling is small, it may even return to normal size. The earlier you start treatment, the more successful it is likely to be.
You will have a lymphoedema specialist who will assess you and suggest ways to treat and manage it. Part of the treatment for lymphoedema is learning things you can do to manage it yourself.
The symptoms vary depending on how much lymphoedema there is and whether it is mild, moderate, or severe.
Lymphoedema can happen anywhere in the body, including the arms, legs, head and neck, chest area and genital area.
To reduce the risk of lymphoedema getting worse, you should ask your doctor or specialist nurse for advice as soon as you notice any of the following:
Swelling You may notice your clothing, shoes, or jewellery (rings or watches) feeling tighter than usual, even before you see any swelling.
Changes in sensation in the limb or area
The limb or area may feel heavy, tight, full or stiff. If the lymphoedema is severe, the swelling may change the shape of the limb.
Skin changes The affected area may feel tight, stretched or a thicker texture, and sometimes it can be dry, flaky, rough or scaly. In later stages, the skin tissue often hardens or becomes fattier.
Aching in the affected area You may feel some discomfort or an aching sensation where the swelling is.
If your doctor, specialist nurse or physiotherapist thinks you have lymphoedema, they should refer you to a lymphoedema specialist. The lymphoedema specialist will then confirm the diagnosis.
Health professionals with specialist knowledge in treating lymphoedema may include:
specialist lymphoedema nurses
breast care nurses
The lymphoedema specialist will assess how much the lymphoedema is affecting you. If it is difficult to diagnose, you may have other tests.
It is important to feel supported during any health journey. By joining and becoming a Member of the Lymphoedema Association of Queensland you instantly tap into a supportive, caring and informed environment where you can connect and network with others who like yourself face the daily challenges of living with Lymphoedema.