In focus: lymphoedema - introduction and finding a therapist

[OvacomeSupport]

Hello

Our ‘Health in Focus’ posts this month will be looking at the topic of lymphoedema. In this first post we’ll give an overview of what lymphoedema is, why you might get it when you have ovarian cancer and how to find a therapist specialising in managing it. In later posts, we’ll also look at aspects of living with and managing lymphoedema.

Lymphoedema means swelling caused when lymph leaks into the tissues. Lymph is a colourless fluid that circulates through the body in a network of vessels similar to blood vessels. It’s part of the immune system and also carries waste products and anything that could be harmful away from the tissues. The lymph drains into the bloodstream and anything that the body doesn’t need is removed and passes out in the urine.

As well as the vessels that carry the lymph around the body, the lymphatic system also contains lymph nodes (also known as ‘glands’). Lymph nodes filter the lymph fluid and also contain white blood cells (lymphocytes) which destroy bacteria and viruses.

Sometimes cancer cells move into the lymph nodes. If your lymph nodes are found to contain cancer cells, you may be advised to have the affected nodes removed. In some cases it’s necessary have all the lymph nodes in the area removed. This is to stop the cancer cells travelling through the lymphatic system.

Loss of the lymph nodes makes it more difficult for the lymph to circulate, so it can pool within the vessels and leak into the surrounding tissues. This causes the tissues to swell (lymphoedema) and feel heavy, tight, full or stiff. If you press a fingertip into the swollen area, it leaves an impression. Sometimes the fluid leaks through the surface of the skin.

Depending on the type of cancer you have and where the affected lymph nodes are, lymphoedema can occur in various different parts of the body. In ovarian cancer, the affected lymph nodes tend to be in the groin, so lymphoedema develops in the leg.

This series of posts will therefore concentrate on lymphoedema of the leg. If you need information about lymphoedema in other parts of the body, you can contact Macmillan Cancer Support on 0808 808 00 00 or the Lymphoma Support Network on 0207 351 44 80.

Lymphoedema can’t be cured, but it can be managed with the help of a specialist to reduce its effects on your health and lifestyle. If you’re experiencing swelling, changes in sensation or skin changes such as stretching, thickening, dryness, or scaliness, seek advice from a healthcare professional who can confirm whether your symptoms are caused by lymphoedema.

If lymphoedema is suspected, you will be referred to a specialist in lymphoedema, such as a lymphoedema nurse, doctor, physiotherapist or occupational therapist. Therapies for lymphoedema may be available on the NHS, but this varies depending on where you live. The Lymphoedema Support Network has a directory of specialists, so you can contact them if you would like help in finding services in your area (details at the end of this post).

We will look in more detail at managing lymphoedema in our later posts this month. Lymphoedema can be managed by techniques including compression of the affected area to reduce fluid buildup, massage and gentle exercise and stretching to help the fluid to circulate. Your lymphoedema specialist will be able to show you how to do these yourself in between clinic appointments.

You can find more information about lymphoedema at:

macmillan.org.uk/cancer-inf...

lymphoedema.org/index.php/i...

cancerresearchuk.org/about-...

If you would like to share your experiences of lymphoedema or have any tips on managing and living with it, please comment on this post. If you would like information or support, please contact our Support Line on 0800 008 7054 or email [e-mail].

Best wishes

Julia (Support Services Officer)

[delia2]

I’m glad you’re dealing with this topic. I had 18 lymph nodes removed for testing during debulking surgery (none positive for cancer) and developed lymphedema in both legs about 6 weeks after frontline. I was able to find a physiotherapist specializing in lymphedema near me in Massachusetts. She measured my legs repeatedly before ordering compression stockings and then after several times. She also did massage and explained how the system worked. Now it’s about 9 months later and I seem to be able to get by for a day or two without swelling in my lower legs if I skip the stockings. I think my upper thighs are not controlled quite as well. The black stockings are great in winter but I hated wearing them in summer!

[OvacomeSupport Partner My Ovacome Team in reply to delia2]

Hello delia2

Thank you very much for sharing your experience of managing lymphoedema. We'll be covering compression garments and massage in more detail in future posts, so it's helpful to have your perspective.

Best wishes

Julia (Support Services Officer)