A total number of two million of persons in Europe are affected today by a rare tumour that makes up one quarter of all malignancies. The classification includes a very heterogeneous group of more than 200 different cancers. Although the increasing precision medicine has led to great advances in treatment and survivor rates of all cancers, because of the rarity of some tumours, patients have lot of difficulties to be diagnosed, to be treated or to follow up care in adequate manner.
The purpose of this chapter is to describe how cancer nurses should be aware of the specific knowledge needed to take care of these patients, which are their main concerns, and the specific needs along the cancer process. It is discussed how few patients have the opportunity to participate in clinical trials or to get the excellent multidisciplinary team that they need because of disparity in equity among countries or regions.
This chapter includes some resources and links of support networks for the patients and professionals.
KeywordsRare disease Uncommon tumour Cancer research
No Conflict of Interest
About authors: Dr. Fernández–Ortega is the principal author. Inma Bonilla has contributed to some part of the manuscript. Both authors declare that there is no conflict of interest.
- 3.European Union directives. Directive 2011/24/EU of the European Parliament and of the council on the application of patients’ rights in cross-border healthcare. Brussels; 2011 [cited 2018 Oct 1]. Available from: https://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:32011L0024&from=EN.
- 4.Decosterd S, Murphy A. Soins en oncologie. 2016;(3):5–9. Available from: www.soinsoncologiesuisse.ch
- 6.Public Health England Reports. Cancer 52 the common voice for less common cancers. Rare and less common cancers. National Cancer Registration and Analysis Service (NCRAS). http://www.ncin.org.uk/publications/rare_and_less_common_cancers.
- 9.Dicato M. Cancer Research UK. What is a rare cancer? 2019;(2017):1–4.Google Scholar
- 10.Gatta G, Maarten Van Der Zwan J, Siesling S, Otter R, Tavilla A, Mallone S, et al. Surveillance of rare cancers in europe grant agreement no. 2006113 work package no. 5 deliverable no. 13 technical report with basic indicators for rare cancers and health care related macro indicators [Internet]. [cited 2018 Sep 30]. Available from: http://www.eurocare.it/
- 11.RARECARENet. Data source and methods [Internet] [cited 2018 Oct 1]. Available from: http://www.rarecarenet.eu/
- 12.Reaman G. Lack of guidelines, clinical data complicate treatment of rare cancers. HemOnc Today. 2008;9(11):9–13.Google Scholar
- 13.Reaman G, Bosl J. Lack of guidelines, clinical data complicate treatment of rare cancers. HemOnc Today. 2008;9(11):9–13.Google Scholar
- 18.Tsoli M, Angelousi A, Rontogianni D, Stratakis C, Kaltsas G. Atypical manifestation of parathyroid carcinoma with late-onset distant metastases. Endocrinol Diab Metab Case Rep. 2017;Google Scholar
- 19.Cetani F, Pardi E, Marcocci C. Update on parathyroid carcinoma. J Endocrinol Investig [Internet]. 2016 [cited 2018 Oct 2];39:595–606. Available from: https://link-springer-com.sire.ub.edu/content/pdf/10.1007%2Fs40618-016-0447-3.pdf CrossRefGoogle Scholar
- 21.Simon Crompton. Ending the isolation. A guide to developing national rare cancer networks. Cancerworld J. 2017/2018;Winter:4–10.Google Scholar
- 23.ESMO Working Group. Improving rare cancer care in Europe recommendations on stakeholder actions and public policies [Internet]. European; [cited 2018 Oct 1]. Available from: http://annonc.oxfordjournals.org/cgi/content/full/18/12/1923
- 30.Foster J. Insider research with family members who have a member living with rare cancer. Int J Qual Methods. 2009;8 [cited 2018 Oct 2]. Available from: http://journals.sagepub.com.sire.ub.edu/doi/pdf/10.1177/160940690900800404 CrossRefGoogle Scholar
- 31.Sugawara Y, Narimatsu H, Hozawa A, Shao L, Otani K, Fukao A. Cancer patients on Twitter: a novel patient community on social media. BMC Res Notes [Internet]. 2012;5:699. Available from: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=3599295&tool=pmcentrez&rendertype=abstract
- 32.Webpage. Cancers rares Le Centre Léon Bérard pilote le Réseau Européen de référence. Le Centre Léon Bérard. http://www.centreleonberard.fr/