It is natural to have many different feelings after a cancer diagnosis. But if you have a rare cancer, you may face extra challenges. Two common issues people with a rare cancer may face are uncertainty and isolation.
Cancer always brings uncertainty, but this can be greater with a rare cancer. Often, there is less information available about rare cancers. This means it can be harder for doctors to answer your questions or make predictions about what may happen.
Many people with cancer feel isolated, but if you have a rare cancer this can be even more of a challenge. You may need to travel to a hospital far from home for treatment. This can mean time spent away from family and friends. If the cancer you have behaves or is treated differently from common cancers, you may feel your family and friends don’t understand what you are coping with.
Talking to people who have the same type of cancer can be really helpful. Realising that other people have similar thoughts and feelings and have faced similar challenges can mean you feel less alone. But it can be more difficult to meet people with the same type of cancer when you have a rare cancer.