Report by ITV Granda Reports correspondent Jennifer Buck
A Manchester woman is raising money and awareness for a rare form of ovarian cancer, in the hope it will force research to be carried out.
Hairdresser Sarah Burns was diagnosed with mucinous ovarian cancer at the age of 25, after a routine operation to remove a cyst on her ovary revealed a tumor.
Further surgery, and a year of tests and treatment, has led Sarah to launch the MOC Project, a fundraising campaign to raise awareness and call for funding and research.
What is Mucinous ovarian cancer and what are the symptoms?
The way the disease comes to light is the same for the different types of ovarian cancer.
Typically this is a few weeks/months of abdominal distension, discomfort and swelling.
It is like irritable bowel except it typically develops in the over 50s and the symptoms deteriorate, whereas in irritable bowel the symptoms come and go.
Professor Gordon Jayson says if a woman develops a few weeks of abdominal distension/bloating/discomfort, she should go her to her GP for investigations.
These include measurement of the Ca-125 (blood test), which is raised in around 75% of cases of ovarian cancer but is often not raised in mucinous ovarian cancer.
If the Ca-125 is not raised and the GP is still concerned they can request an ultrasound.
She said: "I'm just one woman. How am I going to make people listen and make people care about this disease?"
But people are listening and pledging their money for the cause, a recent fundraiser raised more than £2,500.
"We need to get the scientific community interested and a UK charity needs to acknowledge there is a problem and there's nothing being done", she said.
Professor Gordon Jayson told ITV Granada Reports: "It is frustrating because the biology is different and therefore we would really like to carry out specific research based on mucinous tumours but there aren't enough of them around.
"I think we have to think about different ways that we could research such patients in response to the challenge laid out by Sarah and other patients with mucinous ovarian cancer to tray and focus on different aspects of molecular biology."
A spokesperson from the Department of Health and Social Care said: "Cancer research expenditure has increased from £101 million to £138 million in the last ten years.
"Funding applications are welcomed for research into any aspect of human health, including Mucinous ovarian cancer."
More information about ovarian cancer can be found on the NHS website.