Younger patients diagnosed later

Younger pancreatic cancer patients, including those in their 30s and 40s, are more likely than older patients to experience delayed diagnosis and to be misdiagnosed, a major new survey has found.

The Pancreatic Cancer Patient Experience Survey 2013 [launched April 2014] of a large cohort of pancreatic cancer patients in England was commissioned by national charity, Pancreatic Cancer UK and carried out by Quality Health.

The survey found twice as many (23%) younger patients (16-54) waited longer to act on their symptoms than the 75 age group (11%), presenting to a GP or hospital doctor more than three months on from the first onset of symptoms.

Younger patients also took longer to get diagnosed, with over a third (35%) reporting a gap of more than three months between seeing a GP or hospital doctor about their main symptoms and being diagnosed with pancreatic cancer. In the older age group (65-74) this was less than 20% of patients.

Younger patients (around 20%) were also found to be more likely to ‘arrive’ in specialist care via A&E departments. For 55-64 year-olds this was just 7%. Nearly twice as many younger patients (47%) noticed more pain or discomfort in the tummy and more pain and discomfort in their back (33%) than the over 75s, perhaps indicative of why many younger patients were diagnosed via A&E.

Worryingly, prior to diagnosis, nearly twice as many (45%) of those questioned aged between 16 and 54 were told their symptoms were “not serious” or were started on treatments for “another condition”, such as gallstones and diabetes, instead of being referred on for further tests, compared to only 23% of the older patient group (75 ).

Overall, the survey found that delayed diagnosis remains a serious problem for pancreatic cancer patients with 38% of patients having to visit their GP or hospital doctor more than four times before being diagnosed, with 16% having to visit on more than seven occasions. In comparison, the latest national cancer experience survey found that for all cancer patients combined nearly 75% of patients are referred to hospital after only one or two visits to their GP.

Alex Ford, Chief Executive of Pancreatic Cancer UK comments; “When it comes to pancreatic cancer we are still battling a serious challenge relating to low levels of awareness and unacceptably long waits for diagnosis. Urgent action is required to counter poor symptoms awareness overall and specifically to understand why younger patients may be vulnerable to delayed diagnosis, though it should be noted the disease affects people of all ages. We must also challenge the widespread misconception that pancreatic cancer is exclusively a disease of the elderly – when in fact 25% of all cases of pancreatic cancer are diagnosed in people under the age of 65.

She adds; “It is unacceptable that it remains a disease where 80% of patients are diagnosed at a point when there is no option for curative treatment. Early diagnosis is vital if we are to improve survival – and greater awareness of symptoms is vital if we are to improve early diagnosis.”

In order to improve public awareness of pancreatic cancer the charity is encouraging everyone, whatever their age, to be aware of the main pancreatic cancer symptoms. These include:

• Yellow skin or eyes and/or itchy skin (jaundice)
• Unexplained weight loss
• Abdominal (tummy) pain that starts as general discomfort which can spread to the back
• Oily floating poo (steatorrhoea)

It is important to remember that these symptoms can be signs of other conditions and may not be pancreatic cancer, but people should visit their GP if they experience persistent unexplained symptoms. For detailed signs and symptoms of pancreatic cancer visit /signsandsymptoms.

The launch of this survey comes as NHS England has confirmed they have referred the development of a new Clinical Guideline and Quality Standard to NICE (National Institute for Health and Care Excellence). In addition, updated NICE guidelines for referral of suspected cancer patients for investigations are expected to be published for consultation this summer.

Whilst this is good news, Pancreatic Cancer UK will continue its lobbying activity in calling for improved training, support and access to diagnostic tools for GPs and other healthcare professionals as well as more rapid referral pathways – including faster GP access to CT scans.