Thanks to all of the devoted families who have fundraised for The Eve Appeal and to the passionate experts across the world, we are now in a better place with small cell ovarian cancer research.
A review published today by a team of experts led by Marc Tischkowitz from the University of Cambridge, has brought together all of the current knowledge on small cell ovarian cancer. This is a rare but devastating form of ovarian cancer that predominantly affects young women, with the average age of diagnosis being 24.
Marc and experts across the world, who all fed into the paper, have been working together over the last few years, to pool together all of their knowledge of this disease to help create a solid base for driving forward future research.
There are less than 500 recorded cases of small cell ovarian cancer, and because of this there has been very little research or data about its genetics, risk factors or new potential targets for treatment. Something which we, the team of experts across the world, and the families affected wish to see change.
The Small Cell Ovarian Project all started in 2012 when Angela Butcher decided that with the last few weeks of her life, she would fundraise for small cell research to try and prevent young women in the future facing the same poor prognosis she did. Since then the Butchers have continued to fundraise for research and have been joined by other families across the globe in the effort to bridge the research gap. They joined Team Eve and we set up the Small Cell Ovarian Project.
In 2016 Marc and his team started work on creating a patient research registry, somewhere that would pool together information and samples from patients across the globe, to give researchers everywhere the access precious data to base their research on.
In 2018, funded by the Small Cell Ovarian Project, the first ever Small Cell Ovarian Cancer Consortium was held, where the experts from across the globe, from a range of disciplines including clinicians, geneticists, basic scientists and pathologists, came together to talk about small cell research, pool together everything they know about the disease and work on getting the patient registry up and running.
The review published today covers all areas of small cell research and care from genetics, hereditary risk, diagnosis, treatment and new potential drug targets, including some of these key developments:
- The SMARCA4 gene mutation: five years ago it was discovered that mutations on the SMARCA4 gene was heavily linked to small cell ovarian cancer. This created a positive ripple effect through research, as not only did it dramatically increase our understanding on what factors may be linked to causing the disease, but also provided a gateway for explorations into potential treatment options.
- The review brings together all of the information known about small cell tumours to aid the diagnosis of the disease, using genetics and the features of the tumour cells.
- In this review, working together, the Consortium present guidelines for the diagnosis and management of women and their families affected by small cell ovarian cancer. This is hugely important, with the rarity of this disease it is likely that many women diagnosed may be getting treated by a team who don’t have much experience of the cancer. These guidelines will help medical professionals give their patients the best treatment and care possible based on current research.
- The paper covers the benefits of offering genetic testing for SMARCA4 mutations to family members of women diagnosed with the hereditary form of small cell ovarian cancer , so that they can be aware of their risk of the disease, and take actions to prevent it. It also covers some of the ethical and management dilemmas that can arise from genetic testing as we still know little about the risks for mutation carriers.
- The review brings together an up to date summary of all of the potential candidates for future drugs and the current research behind those targets, to allow scientists to see what areas have been explored and where their research is best placed.
A huge thank you to the consortium and all of the dedicated researchers within it, to the families who have fundraised, and to everyone who has supported them along the way. The research base behind this rare cancer is small, and all of #TeamEve want to see this change, and this review paper will help be a starting block to propel research forward and ultimately help save the lives of young women.
The review, Small Cell Carcinoma of the Ovary, Hypercalcaemic Type- genetics, new treatment targets and current management guidelines, was published in Clinical Cancer Research, you can read it in full here.
You can find out more about the Small Cell Ovarian Cancer Research Fund and Consortium on smallcellovariancancer.com.