Celia Diez de los Rios, Lecturer at the University of Navarra, Spain, Board Member at From Testing to Targeted Treatments (FT3), Oncology Advanced Nurse Practitioner, Research Fellow at the University of Glasgow, shared a post on LinkedIn:
“Due to the upcoming hereditary cancer special edition and the particularity of this month, I’ve been scanning the latest publications on hereditary cancer syndromes.
And there is something that I continue seeing, research focuses a lot on:
- Cascade testing.
- Genetic test results.
- BRCA and Lynch carriers (and much more on BRCA than Lynch).
I notice that there is less work on previvors, who live with risk but without a cancer diagnosis. Very little on other hereditary cancer syndromes. And even more, there is limited focus on the long-term lived experience.
As someone whose PhD explored this space, I can’t help but reflect: we still have a long way to go. Previvors, and those with less ‘well-known’ syndromes, deserve the same visibility, resources, and inclusion.
Not only in research, but also in clinical pathways, education, and funding.”
More posts featuring Celia Diez de los Rios on OncoDaily.