Research Information System
ESMO OPEN, vol.10, no.3, pp.2-3, 2025 (SCI-Expanded)
Background: Rare tumors are diseases that every clinician dealing with cancer has
difficulty in encountering and seeks solutions for. This is the first study in Turkey that
aims to assess the situation with rare tumors.
Methods: A total of 207 out of approximately 900 oncologists participated in the voluntary
survey,which was prepared to determine the knowledge, experience, and opinions on rare
tumors in Turkey. The responses to the 28-item questionnaire and categorical measures
were summarized as numbers and percentages. The IBM SPSS Statistics Version 20.0
software program was uutilizedfor the statistical analysis of the data.
Results: In our study, 80.7% of the participants work in a tertiary university or training
and research hospital, and 72.9% are medical oncologists. Only 28.5% of the oncologists
in our study are aware of the spectrum of rare tumors. The proportion of
participants without training in rare tumors is 35.7%. The most common difficulty
diagnosing rare tumors was ‘insufficient clinical guidelines and scientific research’,
followed by ‘insufficient specialized human resources’ (35.9% and 32.6%, respectively).
96.6% of the participants think diagnosis and treatment should be performed
in a center experienced in rare tumors. One in two oncologists sees an average of 0-5
rare tumor patients per year. 80.2% of oncologists request molecular testing in
addition to pathology when diagnosing a rare tumor. The most common location of all
rare tumor types is the Mediterranean region in Turkey. The most common rare tumors
in the study were mesenchymal tumors (sarcomas) (55%), followed by solid
organ epithelial tumors (17.5%) and primary brain tumors (13.6%). The most common
histological subtype of mesenchymal tumor was soft tissue sarcomas (42.4%), while
the most common solid organ epithelial tumor was GIS NET (22.9%). In order to solve
these problems and contribute to the satisfactory level of the current health system
in the field of rare tumors, oncologists in Turkey primarily recommend the establishment
of ‘national or international working groups’.
Conclusions: To contribute to the development of the current health system in the
field of rare tumors in Turkey, oncologists need to be aware of natinaol and international
working groups, national guidelines and experienced centers