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Around 10,000 people in the UK are diagnosed with unknown primary tumours every year.

Experts at The Clatterbridge Cancer Centre are calling for greater awareness among health professionals and the public and more clinical trials relating to the fourth most common cause of cancer-related deaths in the UK.

Unknown primary tumours are diagnosed when oncologists are unable to identify the source of the cancer, as it has spread to other parts on the body by the time a patient is diagnosed. Richard Griffiths, Consultant in Medical Oncology at The Clatterbridge Cancer Centre, commented: “Unknown primary cancers are usually very advanced when they first come to light because the primary cancer has given no symptoms. This is why the survival rate of this type of cancer is currently very low.

“We want to help combat this and are developing a trial using a PET scanner to help provide better information on where cancer tumours and cells are present in a patient’s body. We hope this format of scan will allow us to offer more tailored treatments to our patients.”

PET (Position Emission Tomography) scans are used to produce detailed three-dimensional images of the inside of the body and are commonly used to work out the best treatment methods for various cancers. They can show how far a cancer has spread and where it started from, something which is particularly important with unknown primary tumours.

An estimated 10,000 patients in the UK are diagnosed with unknown primary tumours every year, making the cancer journey even more distressing as they’re unable to identify where their cancer started. One patient who has been affected by this type of cancer is Sandra Abbott (58) from Upton on the Wirral.

Sandra was diagnosed with cancer in May 2013, after she became increasingly unwell with what she thought at the time was a severe chest infection. She had an operation at Arrowe Park Hospital to remove a litre of fluid from around her heart and it was then that cancer cells were found.

Sandra commented: “I was absolutely shocked when the doctors told me I had cancer as it hadn’t even crossed my mind. Up until that point, I had felt fine and to go from a suspected chest infection to cancer is such a short space of time was just so hard to take in. I have three children, 11 grandchildren and one great grandchild so I wasn’t ready to be taken away.”

Sandra was admitted for treatment straight away at The Clatterbridge Cancer Centre. She continued: “Having experts on hand so close to home made the whole experience so much easier but even though I was receiving treatment and everything was proving to be successful, I was unaware of where my cancer actually stemmed from. I assumed it was lung cancer as the pain was in my chest but doctors later told me that wasn’t the case. I do have a tumour on my lung, but that is only as a result of the cancer spreading by the time of diagnosis and doctors have found it impossible to find the source of my cancer, which has been distressing.”

Dr Richard Griffiths, who is also Sandra’s consultant, commented: “Sandra’s story is like many others who are diagnosed with unknown primary tumours. It can be an extremely difficult time for patients as they may find it hard to understand how they’ve lived with cancer for so long without noticing any symptoms. Thankfully, we were able to treat Sandra in good time and she’s now in remission and visits The Clatterbridge Cancer Centre every three months for a check-up.”

Sandra added: “I can’t thank the doctors and nurses enough for the way I have been treated and I’m over the moon to be in remission but I still find it hard when I’m talking about my cancer as it all seems such a mystery. I think any research that can be done in to this area is fantastic and will help a significant number of patients during such a distressing time. So many people are affected by unknown primary tumours, yet many people are unaware this type of cancer even exists.”

Dr Richard Griffiths and his team at The Clatterbridge Cancer Centre are keen for much greater awareness of cancer of unknown primary cause and more clinical trials of treatments.

Dr Griffiths continued: “It can be hard for healthcare professionals who don’t specialise in this area to know how best to diagnose unknown primary cancer as it is not always obvious which are the best tests to perform and this can lead to delays in starting treatment. Raising the profile of this cancer group and carrying out more clinical trials could make a significant difference to patients through earlier diagnosis and treatment known to give the best possible outcomes.”

For more information, visit http://www.clatterbridgecc.nhs.uk/

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