Cancer of Unknown Primary – Don’t Die of Ignorance

What doctors don’t know about cancer

What does it mean when doctors tell a patient that they have cancer but, unfortunately, they can’t tell you what kind of cancer you a suffering from. How can they not know? Why don’t they know?

This is what happened to my daughter Megan Young seven years ago. What it means is that the medical experts are unable to locate the primary tumour. And what this means – in turn – is that treatment will be a very hit and miss affair because most cancer treatment is targeted at specific tumours whether that be breast, colon, lung and so on.


Megan aged 17

The charity working to make people aware

Megan died, aged 32, four months after becoming ill. She never received a definitive diagnosis. But shortly after her death we, her family, discovered that she was suffering from something known as Cancer of Unknown Primary (CUP). Most people have never heard of this and neither had we until a few weeks after her death when I made contact with a very special charity – the Cancer of Unknown Primary Foundation.

The charity had been set up to raise awareness of CUP, to let people know that such a situation exists, and to improve treatment and research relating to CUP.

Cancer of Unknown Primary Foundation marks tenth anniversary

The foundation has just marked its tenth anniversary – ten years during which the charity’s work has been instrumental in helping to ensure that more has happened to benefit CUP patients than in any previous decade.

‘CUP is no longer the neglected cancer group that it was ten years ago,’ says the charity. ‘No longer is CUP a failure of diagnosis: it is a diagnosis in its own right.’

Through the work of the charity, increasing numbers of medical professionals are aware of CUP. This was not the case when my daughter was being treated. The words ‘cancer of unknown primary’ were never uttered. Instead we watched time running out as test after test failed to pinpoint the cancer.

Wordsmith book helps charity

I teamed up with the Foundation to publish a book of my daughter’s poetry with a donation going to the charity from each sale. Megan was an equine vet but she was also a poet. Wordsmith: The Gift of a Soul is a record of her life seen through her poetry. It is also a contribution towards the Foundation’s awareness campaign.

Ignorance causes distress

But ignorance remains a huge problem. ‘On the whole … the general public’s awareness of CUP remains very limited. This adds to the distress of patients because it is frustrating to have to explain the unique nature of a CUP diagnosis to friends and acquaintances.’

When my daughter Megan was about seven years old, AIDS was hitting the headlines for the first time. There was an awareness campaign with posters everywhere saying ‘Don’t die of ignorance’. I remember Megan coming into the kitchen and, unsure what all this meant, saying to me: Mummy, I don’t want to die of ignorance.

Twenty five years later she did died of ignorance – ignorance about a terrible disease which continues to cut lives short and  leave grieving families with so many unanswered questions.

Immunotherapy – is this the future?

The Cancer of Unknown Primary Foundation is the only substantive charity in the world focussed on CUP. Its work is vital. Research to help CUP patients will help all cancer patients. The charity has committed £100,000 towards an immunotherapy trial at Hammersmith Hospital. This, the charity believes, could be the future.

‘Immunotherapy treatment has led to remarkable clinical responses in patients with many different types of ‘hyper-mutated’ cancers, including melanomas, non–small-cell lung cancer, renal cell carcinoma, bladder cancer, and Hodgkin’s lymphoma,’ it says.

‘The future for CUP patients – and it is partly here, but not evenly distributed – lies in understanding the molecular nature of the cancer. Two ways of approaching this are apparent: using gene expression profiling of the CUP tumour to aid diagnosis which gives a better idea of its primary site for chemotherapy treatment; and using Next Generation Sequencing of biopsied tissue to identify ‘actionable mutations’ of the cancer, for targeted treatments (immunotherapy), where the primary site is of little relevance.’

To read more about the charity’s work go to

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