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Knowledge

Living with cancer: Online experience reports and tips from affected individuals

The picture shows an image from the website krankheitserfahrungen.de

Brandenburg/Havel, 3 May 2024

Laura Filip (real name withheld) was 33 when she was diagnosed with colorectal cancer. She is living with an artificial stoma and undergoing chemotherapy. Although she suffers considerably from lack of autonomy, she tries to enjoy life’s pleasures such as weekend trips and is grateful for support from her social environment. Prior to the cancer diagnosis, she was used to coping with problems alone. But at an early stage she found cancer and its implications too much of an issue not to talk about it. This is why she decided to add her personal story to the MHB project krankheitserfahrungen.de. The website publishes new reports on life with cancer.

The impact of a cancer diagnosis on affected persons and their environment can be significant. In many cases, everyday life needs to be adapted to treatments, and there are pains, side effects of interventions and psychosocial stress to cope with. Life changes overnight, the same as one’s personality and aspirations. How to find ways to deal with the illness? How to maintain quality of life despite and with the illness? What is helpful, and where to find help? The website krankheitserfahrungen.de presents stories told by people who describe life with cancer and other diseases, their experience with medical care, changes in daily routines, and the support they receive.

The website is part of the DIPex Germany project (German database project on individual patient experiences), located at the MHB Institute of Social Medicine and Epidemiology and currently co-financed by Krebsallianz. The primary objective is a science-based low-threshold service of information and support for affected individuals, families and health professionals such as physicians and nursing staff.

New experience reports on breast, colon and prostate cancer


New experience reports on breast, colon and prostate cancer have now been added to reports published on the website krebserfahrungen.de since 2012/2013, thanks to funding from Krebsallianz. Interview partners from all over Germany were selected and invited to describe personal experiences with disease management, medical treatment, and implications for their social environment.

One of them is Alina Schiller; she was diagnosed with breast cancer in 2018 when she was 25. Today she is free of cancer and active in self-aid work to raise an awareness of cancer in young adults. Jörg Runde was 42 when he fell ill with prostate cancer; successful therapy was followed by a relapse and the formation of metastases. Incontinence is a severe impairment in his daily routines and a considerable psychological strain. He remains, however, hopeful that future research may improve his condition, and feels motivated by a “bucket list” of things he wants to do in the time that is left.

All interviews with affected persons underwent scientific evaluation and can be read, viewed or listened to on the website www.krankheitserfahrungen.de which now offers reports from 50 patients with breast cancer, 47 with colon cancer and 49 with prostate cancer.


Website with ten different subject areas


Cancer reports constitute only three from a total of ten different subject areas on the portal. It also offers comprehensive information on: ADHS in children and adolescents, chronic inflammatory bowel disease, chronic pain, COVID-19, diabetes type 2, epilepsy, eating disorders: anorexia and bulimia, medical rehabilitation.

The website offers a wide range of experiences and practical tips as well as general orientation and helpful suggestions for day-to-day management. Moreover, it has a list of further sources of information on medical aspects of cancer and support options.


Benefit for affected individuals, families and health professionals


DIPEx Germany is a member of the umbrella association DIPEx International. This body and its member organizations aim to improve awareness and understanding of illness and health. Experiences are recorded and analyzed pursuant to uniform scientific standards and made available to the general public, for the benefit of affected persons and their families, health professionals, political decision-makers and researchers. International collaboration serves to produce a unique collation of experiences and material for cross-country comparative analyses.

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