Lymphoedema is not a women's disease, as it is sometimes referred to. Men and women can both develop primary or secondary lymphoedema.
Primary lymphoedema, such as Meige or Milroy disease is hereditary and can affect twice as many women than men. If not present at birth it can start around puberty time or later on during changes in life. Secondary lymphoedema can occur because the lymphatic system has been compromised in some ways by accident or radiation or lymph nodes have been removed during cancer surgery.
The reason for secondary lymphoedema to occur is that the lymphatic system is composed of superficial lymphatic channels, lymphatic vessels and lymph nodes, which are packed with immune cells destroying or disposing of metabolic wastes. Metabolic wastes are composed of the residue from your body using energy, for example gases that cannot be used by the body, big molecules such as big proteins, dead cells debris or fat from the digestive system. Cancer cells too can travel via the lymphatic fluid as it drains away from the cancer affected area. These cells can get caught in the lymph nodes. During surgery, your surgeon removes these lymph nodes to avoid the spread of cancer to other sites and in doing so compromises the lymphatic system. Consequently the fluid which normally drains towards these nodes has nowhere to go and pools in the tissue creating swelling, which is called lymphoedema.
According to statistics, Lymphoedema in the lower extremity is more prevalent than the upper extremity and other parts of the body. Regardless of the area of the body that is affected, Lymphoedema causes discomfort to anybody with the condition. Cancer Australia estimates that about 20% of survivors of breast, gynecological and prostate cancer will develop lymphoedema. This statistic would include men developing lymphoedema secondary to breast cancer surgery.
In late 2017, a Clinical Specialist, Katherine Konosky conducted an investigation and observed that men address lymphoedema differently than women. Her research was based not only on her clinical practice but also on the messages that flooded from around the world from men describing their experience with lymphoedema after she posted a blog on Instagram and Facebook. She concluded that men generally delay asking about their symptoms and seeking treatment and are not aware that the condition can worsen with limb deformation and cellulitis as extreme examples.
In my own experience at JM Lymphoedema Clinic, I usually see very few men and when I do they are usually in an advanced stage of their condition. My approach is different, as understanding of the condition and expectations of the treatment can vary. I like to tailor my delivery of information to each individual regardless of their gender in an attempt to provide the best care possible so they walk away with an understanding of how to manage their condition for a fulfilling life. Downplaying lymphoedema treatment can lead to further complications so I try to impart just how important regular care is. To everyone and men in particular this means integrating a treatment plan into their lifestyle so it impacts them as little as possible and allows them to get on with the things that they value as important.
To everyone and men in particular, please keep in mind that for any type of cancer surgery, depending on its complexity, your treatment plan which can include chemotherapy, radiation and medication, puts you at risk of developing chronic secondary lymphoedema. Please take care of yourselves and seek advice with your doctor should you develop symptoms in your body such as feeling of heaviness, swelling, reduced joint movement and skin redness spreading over your limb. Early detection and treatment is the best way to manage lymphoedema. It is not life threatening by itself, mainly a chronic nuisance that can be dealt with and kept under control with lymphatic drainage massage and/or wearing a compression garment.
Awareness is the name of the game, stay vigilant and be pro-active. Strength grows in the moments you think you cannot go on but you keep going anyway (Anon).