Living with Kaposi's sarcoma
Most people feel overwhelmed when they are told that they have Kaposi’s sarcoma (KS). You’re likely to experience many different emotions. These are part of the process many people go through in trying to come to terms with their illness. Reactions differ from one person to another. There’s no right or wrong way to feel.
Partners, family and friends often have similar feelings and may also need support.
Some hospitals have their own emotional support services with trained staff, and some of the nurses on the ward will have received training in counselling. You may feel more comfortable talking to a counsellor outside the hospital environment or to a member of your religious faith, if you are religious.
Everyone has their own way of coping with difficult situations. Some people find it helpful to talk to family or friends, while others prefer to keep their feelings to themselves. There is no right or wrong way to cope, but help is available if you need it. Our cancer support specialists can give you information and support to help you cope.
For some people, KS may be the first sign that they have HIV/Aids. Coming to terms with this can be very difficult. There are many organisations that offer help and support to people with HIV/Aids. We have listed some of these on the resouces page.
Coping with skin lesions can be difficult, especially if they’re very visible. It may be possible to use skin camouflage to cover small flat skin lesions and make them less noticeable. Some clinical nurse specialists, the British Association of Skin Camouflage, and the organisation Changing Faces offer a camouflage make-up service and can teach you how to apply it.
KS can damage lymph vessels, which can lead to a build-up of fluid in the arms or legs (lymphoedema). If you have lymphoedema, it can also be hard to cope with, but there are ways it can be treated and improved. There are specialist nurses who treat lymphoedema and run clinics that you can be referred to.