Coping with a diagnosis of cancer is difficult both emotionally and practically. When faced with a diagnosis of a rare type of cancer it can be particularly challenging to find other people who have the same experience, and to see how you fit into the mainstream of cancer care. It is also harder to realise what it really means that the cancer is rare, and to fully understand its implications.
Experts say that a type of cancer is rare if fewer than 6 in 100,000 people are diagnosed with it each year. This means that 1 in 5 people diagnosed with cancer in Europe have a rare type. Small cell ovarian cancer (SCCO) makes up less than 2% of all gynaecologic malignancies and is recognized as two different entities: SCCO of hypercalcaemic type (SCCOHT) and SCCO of pulmonary type (SCCOPT). Since 1979, when the SCOOHT was described for the first time as a separate entity by Dr Robert E Scully, just over 300 cases have been recognised worldwide. Because it is so rare we are still not able to establish precisely how many cases are diagnosed annually in the UK.
Even though SCCOHT is a rare cancer, it is most common undifferentiated type of ovarian cancer which means that the cells appear very immature under the microscope and do not look like cells in the tissue from which it arose. SCCOHT typically affects women under 40 years of age with an average age of 24. This early age at diagnosis is also one of the key characteristics that separates SCCOHT from SCCOPT, which usually occurs in older women.
How does the rarity of the cancer affect research into that disease?
Research into rare types of cancer is much more difficult to conduct compared to common cancer types. The biggest challenge remains our ability to identify affected women at an early stage so we can offer opportunities to take part in the research. We also need to gather information on a large enough group of patients that will accurately reflect the condition. In rare diseases data collection can often take many years. Most clinicians may have seen only one case of SCCOHT in their lifetime, if at all, which means it often takes longer for the correct diagnosis to be made. Other key challenges posed in rare cancers include limited access to centres with clinical expertise, no standards for effective treatments and inadequate funding for pre-clinical and clinical research programmes. Additionally, it can often be difficult to obtain funding for research into rare cancers as funding agencies may think that the cancer is not relevant or not a big enough problem. The lack of existing literature and researchers working on a rare cancer can pose further barriers.
Small Cell Ovarian Cancer Project
The Small Cell Ovarian Cancer Project was launched to address these problems, with two main aims:
1. To develop a comprehensive global patient database including tissue collection for future research purposes. We are still at the early stages and see this as a long term project which will gradually advance knowledge and clinical expertise
2. To support patients during the difficult period of diagnosis and throughout treatment. By harnessing the power of electronic communications and social media we can do this at a global level
Our research only exists thanks to the great kindness of our donors who have often have experienced the diagnosis of SCCO themselves, or were supporting a relative during that difficult period. The SCCO Project was launched thanks to the kindness of the Butcher family who lost their daughter Angela to SCCOHT. Angela’s wish was for the family to work with The Eve Appeal to establish research into SCCO and her family have made this come true by their amazing fundraising efforts to support the cause. We are also extremely grateful to the families of Louise Mashiter, who also sadly lost her battle with SCCOHT last year and Matt Lees whose wife Emma who has been diagnosed with SCCO and is currently undergoing immunotherapy.
Our research project would not be possible without their contributions – so a HUGE thank you to all involved for their very generous donations; all united with one vision of ensuring women of the future are not affected by Small Cell Ovarian Cancer.
To find out more about small cell ovarian cancer, and the project taking place at Cambridge University, please visit http://www.sc-ovca.org/