Why it matters for patients

Rare Cancer and Survivorship are both complex discussions in their own right, with each requiring much research and patients deserving support and reliable information sources. There are over 198 types of rare cancer, highlighting the need to help patients and their carers understand the characteristics of their cancer and the treatments available to them.

Survivorship focuses on health and the physical, psychological, social and economic issues facing patients at the end of their treatment for cancer. It is a unique and ongoing experience for each person and those around them, and it is important to find ways to ensure a good quality of life going forward. The key to survivorship is to regain, as much as possible, the important aspects of your life before cancer.

Recognising the needs, ESMO (European Society for Medical Oncology) in collaboration with IPOS (International Psycho-Oncology Society) and supported by ECPC created the Patient Guide on Survivorship. ESMO with support from ECPC also developed the Rare Cancer Patient Guide.

“These guides were designed to disseminate knowledge and ensure that patients receive the most effective treatments available and high-quality care they deserve.”

– Dr Lorenz Jost, Chair ESMO Cancer Patient Working Group

How to make the most of this tool

As part of our ongoing work to support people with rare cancer, we are working to identify and produce information detailing the nature of rare cancer to assist patients, carers and relatives. There are currently 8 rare cancer guides available and we aim to continue this work. In the Patient Guide on Survivorship, you can find specific information detailing what survivorship means and how you can navigate your journey. In doing so, you can explore a range of topics, including coping with life after treatment through highlighting who can help and support you, preventative health and what lifestyle changes you can make for physical and emotional health and follow-up care involving the detection and management of treatment and prevention of cancer recurrence.

The guide also explores how to keep a personal health record and a survivorship plan at this important time in your life. As time passes, it can be hard to keep track and remember all the details of your treatment, diagnosis, side-effects and follow-up. All this information is crucial for doctors, and this guide proposes an innovative but easy-to-follow structure for keeping on top of your cancer experience. It is important to know that your health and road to recovery is your own personal journey and there are people and tools that can help you along the way. So, take advantage of these innovative guides and see how they can benefit you and those around you!