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Patient Guide on Survivorship

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Survivorship is a unique and ongoing experience, which is different for each person and those close to them. A key to survivorship is to regain, as far as possible, the important aspects of your life before cancer, and to find new pathways to a satisfactory life going forward. The Patient Guide on Survivorship is created by ESMO with contribution of the ECPC and reviewed by IPOS in order to help you and people like you at this important time in your life.

Survivorship focuses on health and the physical, psychological, social and economic issues affecting people after the end of the primary treatment for cancer. Post treatment cancer survivors range from people having no disease after finishing treatment, people who continue to receive treatment to reduce the risk of the cancer coming back and people with well controlled disease and few symptoms, who receive treatment to manage cancer as a chronic disease.

ESMO Patient Guide on Survivorship Cover

Survivorship care includes issues related to follow-up care, the management of late side-effects of treatment, the improvement of quality of life and psychological and emotional health. Survivorship care includes also future anticancer treatment where applicable. Family members, friends and caregivers should also be considered as part of the survivorship experience.

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In this guide you can find information on:

  • Support in coping with the new reality - Who can help me?
  • Life after initial treatment - How can I get my normal life back?
  • Preventive health - What lifestyle changes can I make to achieve optimal physical and emotional health?
  • Follow-up care:
    • Detection and management of treatment- or tumour-related symptoms
    • Prevention and detection of cancer recurrence
    • Prevention and early detection of new primary cancers for patients and their family members
    • Comorbidities and management of comorbidities
    • Keeping a personal health record / Survivorship care plan

A section on support in coping with the new reality elaborates cancer rehabilitation, patient support groups, psychological support of the patient and his/her family, the role of the health care professionals (i.e. oncologist, family doctor, oncology nurse).

A section on life after initial treatment elaborates perspective and self-confidence, changes in family and relationships, sexual life after cancer, having children/fertility after cancer, returning to work, finding new hobbies and interests and managing finances.

A section on preventive health elaborates healthy lifestyles such as physical activity, nutrition and weight management, stress management reducing alcohol consumption, smoking cessation, avoidance of excessive exposure to UV radiation, avoiding worsening side-effects through the use of specific drugs and chapter on infections and vaccinations.

A section on detection and management of treatment- or tumour-related symptoms elaborates problems of chemotherapy-induced nausea and vomiting, pain and peripheral neuropathy, bone loss with the possibility of subsequent osteoporosis, mucosal, dental and soft tissue problems of the head and neck, skin toxicity, lymphoedema, cardiovascular problems, fatigue, sleep disorders, cognitive function, depression and anxiety, fear of recurrence, eye problems, hormonal insufficiencies, infertility, amenorrhea, menopause, sexual dysfunction including impotence and lack of libido, urological problems, gastrointestinal problems, and lung problems. It also elaborates prevention and detection of cancer recurrence, prevention and early detection of new primary cancers and management of comorbidities. 

These sections are followed with a possibility for personalised survivorship check list, care plan and treatment summary.

The final part is dedicated to survivorship dictionary.

The Patient Guide on Survivorship is published in 2017.

To enquire about permission to translate or support the distribution (in English or in a translated version) of the Patient Guides series, please send an e-mail to patient_guides@esmo.org

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