It aims to develop an International Research Collaboration and Patient Registry. By consolidating the knowledge and experience of both patients and clinicians we want to provide a necessary foundation for effective research into the small cell cancer.
Small cell is rare but important type of ovarian cancer that predominantly affects young women, with a mean age of 24 years at diagnosis and often a poor prognosis. It represents less than 1% of all ovarian cancer diagnosis, with fewer than 300 cases reported in the literature so far.
Recently, there has been major a breakthrough in the understanding of the aetiology of small cell cancer of the ovary with the discovery that inherited mutations in the SMARCA4 gene explain many of the familial cases of the small cell ovarian cancer of hypercalcaemic type ( SCCOHT). The gene is somatically mutated in the majority of the SCCOHT cancers. This is the first step in the targeted path to targeted drug development and implementation- a similar process in the BRCA- related cancers took 20 years from the identification of the BRCA1 and BRCA2 genes to the discovery and implementation of PARP inhibitors. SCCOHT is rarer than BRCA-related cancer which makes it even more challenging to study.
The project is an initiative of Dr Marc Tischkowitz and Prof Martin Widschwendter. It is supported by Eve Appeal Angela’s Fund- created in a memory of Angela Butcher who was diagnosed with small cell ovarian cancer and bravely fundraised with her family to start the first in UK research into the small cell ovarian cancer.
A personal story...
Towards the end of 2014, Matt Lees’ other half was diagnosed with small cell carcinoma of the ovary – the same incredibly rare form of cancer as Angela Butcher. Here, Matt discusses his own personal experience of the disease and the rationale behind helping to fundraise for Angela’s Fund.
In his own words “Over the past few years things have improved, but for a long time it was a real struggle to find any hope. Please help me to secure a future where others in our position might be granted a slightly brighter outlook.”