My daughter Megan was diagnosed with cancer in September 2009, almost exactly nine years ago. It was a terrible shock. She was 32, a strong and healthy young woman with an 18-month-old baby boy. I remember her coming to my house on a sunny afternoon to tell me.
The cancer was abdominal but they didn’t know what type of cancer it was. They were going to have to do more tests. And so, over the next few weeks, these tests were carried out and day after day we waited for the results. At one point they decided it was probably advanced ovarian cancer. They would operate, then there would be chemotherapy, the survival rate was about five years.
Five years. So short a life. It seemed dreadful. In the event we would have given the world for five years. My daughter died four months after the initial cancer diagnosis. It wasn’t ovarian cancer. Doctors never did discover the primary site. Megan died from cancer of unknown primary.
Not that we knew that at the time. Doctors never mentioned that there was such a thing as Cancer of Unknown Primary. My impression was that they did not know. Instead the final four months of Megan’s life were spent frantically seeking the primary tumour.
Raising awareness of Cancer of Unknown Primary (CUP)
Cancer of Unknown Primary (CUP) is a cancer like no other. Few people have heard of it – and that includes doctors.
Twelve years ago, John Symons founded the Cancer of Unknown Primary Foundation in order to raise awareness of CUP and to increase research into it. He did this following the death of his wife Jo from CUP aged 46. The mission of the Cancer of Unknown Primary Foundation is to ‘Make the Unknown, Known’.
According to the CUP website, to Jo’s family and friends ‘it seemed incomprehensible that, in the 21st century, it was not possible to make a diagnosis and that little was being done to promote awareness and research; or to offer information and support to CUP patients and carers.’
Promoting awareness of CUP in Europe
This summer John Symons, now the director of the Cancer of Unknown Primary Foundation, was in Brussels at the invitation of MEPs Against Cancer led by British MEP Theresa Griffin. The group brings MEPs together from across Europe in order to improve cancer control and prevention in Europe, in the belief that European co-operation adds value to member state actions.
He told members that CUP is the 5th most common cause of cancer death in the UK after lung, bowel, prostrate and breast and that patients and their families go through a double agony. Typical responses are: How can the primary not be diagnosed in 2018!; Why does this oncologist not know?; what do I tell my loved ones?
Partly as a result of the work of the CUP Foundation, the number of cases and deaths is falling as a result of better diagnosis and treatment. In 1996 there were more than 15,000 deaths as a result of CUP. The number was down to 9,410 in 2016.
Sunday 23 September sees the start of Cancer of Unknown Primary week. For more information go to https://cupfoundjo.org/