The importance of diagnosing cancers earlier – the patients’ perspective

Diagnosing and treating cancer earlier is crucial – it gives patients the best chance of surviving the disease. But sadly, only half of patients are being diagnosed at an early stage.

It’s a problem we’re trying to solve, and a recent bumper selection of research papers in the British Journal of Cancer highlight the progress being made.

But behind all that research are thousands of people with their own stories of diagnosis and treatment. Some of those stories showcase the NHS at its best, while others reveal the frustration, worry and delays that can come with a cancer diagnosis.

A patient’s personal story provides valuable insights into the challenges and issues associated with the diagnosis and treatment of cancer and how they might be tackled. And these stories have a vital role to play in shaping the research we do and informing the priority areas for us and other organisations like the NHS – including through the independent cancer taskforce looking at the future of NHS cancer services.

With that in mind, we spoke to five people who have previously been diagnosed with cancer about their experiences of diagnosis and treatment, and where they want to see more progress being made.

‘I have your X-ray, you have lung cancer’ – Tom’s story

I was an engineer, working all over the world and in 1993 I went to Jeddah in Saudi Arabia, to start a new job. I had to pass a medical but I felt fit and healthy, so I didn’t think there would be a problem. Then during the medical I was called back into the doctor’s office to be greeted with ‘Ah Mr Haswell! I have your X-ray, you have lung cancer.’

When I got back to Glasgow I had all my tests done really quickly. After my biopsy, the doctor said ‘I didn’t see anything down there that made me stand back in horror.’ He said they’d be in touch but I didn’t see them again for two months. My wife kept asking me to phone them and I said, ‘Don’t worry, they’ll be dealing with the serious cases of lung cancer first!’

But when I went back to the hospital, I was told there were no treatments available that would have any effect on my cancer, which was Stage 3. I was given a very short life expectancy. To hear that, after a couple of months of waiting, was a bit shattering. The tumour size had increased in that time – in the first scan it was 7 by 4cm, and it had increased to 8 by 5cm.

Fortunately, I got onto an early phase clinical trial. I didn’t dare hope for a cure but I thought it might give me a bit more time with my family. And yet I’ve now been clear for twenty years.

Ideally, I think we need to find better ways to diagnose patients before they even know something’s wrong. Some cancers, like mine, have developed and spread long before anyone knows there’s a problem. I feel very fortunate in what happened to me.

Tom Haswell – diagnosed with lung cancer in 1993, Cancer Research UK patient advocate for clinical trials.

‘My early diagnosis meant it was just an unpleasant episode’ – John’s story

I got an invitation to the bowel cancer screening programme just after my 61^st birthday. I didn’t hesitate, and I would encourage everyone who gets that invitation to do the same. A lot of people think it’s a very messy process, but it’s much the same as what you do every day when you go to the loo.

A couple of weeks after I sent it off, they wrote back asking me to do it again. Then a few weeks after my second test I was called into the hospital for a colonoscopy, which doesn’t sound pleasant but the thought of it is actually worse than the reality.

As they were going through I saw a little thing on the screen, like an almond. I said to the registrar, ‘That doesn’t look right,’ and he said, ‘it isn’t’. It was Duke’s Stage A bowel cancer – the earliest stage it can be. I was in hospital for a week after the operation and was back to normal within a month. It’s seven years on and I’ve been fine ever since.

Without the test, I might have gone on for years not knowing I had bowel cancer. By the time I did find out it might have been too late, or the treatment more traumatic.

The screening programme may have saved my life, and I’m disappointed at the national take-up percentage. Only half of people eligible for bowel screening take the test. We need to find better ways of engaging with people about it – improving that will save lives and save the NHS money.

For me, cancer hasn’t had much of an effect on my life – my early diagnosis meant it was just an unpleasant episode. Thanks to doing that test and being diagnosed early, I’ve been able to carry on with normal family life, watching my two children settle down. The precious moments have been the most normal ones.

John Marsh – diagnosed with early stage bowel cancer through the bowel screening programme in 2008, patient advocate and patient speaker at next week’s National Awareness and Early Diagnosis Initiative (NAEDI) research conference.

‘I was only the third Hodgkin lymphoma patient my GP had seen in 40 years ’ – Richard’s story

I was thirty-eight. I’d recently been promoted in my work in local government and was just starting as a Chair of Governors in a local school. I only really thought about my health when I had rugby injuries!

I started to get raging night sweats, so bad that some nights I had to sleep in the bath. I discovered a lump under my ear, had very itchy legs and was losing weight. I explained it all away – the weight loss was because of pre-season training and working late, and the night sweats were down to a virus. I knew I was ill, but I didn’t go and seek medical help until there was no other option.

After five months I went to my GP, who sent me to my dentist thinking the lump may be an infected tooth. My dentist was suspicious and after checking for and finding lumps under my armpits, sent me to the ear, nose and throat specialist. After tests, I was told I had Hodgkin’s lymphoma which had spread to my bone marrow.

My GP didn’t get it right first time but if the dentist had sent me back to the GP, sooner or later I think we’d have been on the right path. I was only the third Hodgkin lymphoma patient my GP had seen in his 40-year career.

I had several courses of chemotherapy and I’ve now been clear for 15 years. Though I wasn’t diagnosed early, I was diagnosed early enough for treatment to be effective. Ultimately that is what is most important for any patient.

When I first started treatment, my three-year-old goddaughter nursed me in her Wendy house over Christmas. She’s now nineteen and studying to be a nurse – I’m so proud! I’m very happy that I lived to see that, and fingers-crossed, I’ll get to see her graduate – and her little brother too.

Richard Stephens – diagnosed with Hodgkin lymphoma in 1998, patient representative on the Independent Cancer Taskforce.

• Read more of Richard’s story along with his take on this year’s survey of cancer patients’ experience of NHS cancer care.

‘If I’d been diagnosed earlier I would have been less scared’ – Lilian’s story

It was a topsy-turvy time – I’d just relocated from New York to become executive director for science, operations and funding at Cancer Research UK. I was really busy with this challenging role and a daily four-hour commute.

My cancer would have been picked up earlier if I’d stood still long enough to pay attention to my health and to take it seriously. I was fifty and thought I was going through the menopause – in retrospect there were clear signs that I had cancer.

I went to my GP for my routine cervical screening appointment – for the first time in eight years! A few days later he called me while I was working late one evening. You know there’s something wrong when your GP tracks you down. He said I needed to go to the hospital the next day.

They did a biopsy and diagnosed me with cervical cancer – I watched it on a screen and saw the tumour myself, clear as day. I was scheduled for surgery in three weeks, but that was cancelled the day before when the MRI scan finally came through and showed it was too late for surgery to be effective. That was traumatic – an MRI is an instant image, and I think it should be instantly transferred to the right person. When I told my mum it was too late for surgery I could tell she thought the cancer was terminal and it crossed my mind too. I was terrified.

I had chemotherapy and radiotherapy instead but treatment didn’t start for another 6 weeks – when you’ve got cancer that feels like a long time to wait. I’ve now been given the all-clear, but if I’d been diagnosed earlier I would have been less scared while treatment and follow-up appointments were all going on.

We know our own bodies best – you know when there’s something wrong. Don’t just put it down to old age and creaking bones. Get out there and see your doctor if things don’t feel right.

At the same time I am concerned that it can be very hard to see your GP face-to-face. Important signs could be missed if you don’t get to see a doctor. I’d also like to see more innovations that make it easy to attend screening – for example, we should think about getting screening units to come to large companies with lots of female or male employees.

On the 6^th December 2013, I was having a check up with my oncologist and she turned and looked me straight in the eye and said ‘I don’t ever want to see you again.’ That news made a lot of people very, very happy – my entire family, my network of friends and support group, my colleagues, and my husband and of course me. These days I’m living as full a life as possible.

Lilian Pittam – diagnosed with Stage IIb cervical cancer in 2009, patient advocate.

Stories to learn from and act on

Regardless of the stage at which these individuals’ cancers were diagnosed, it’s clear from talking to them that what matters most is that they could still be successfully treated. They can now look back with happy memories, which they stress is really important.

But their experiences clearly highlight different challenges that led to delays in their diagnosis and treatment, showing what a difference being diagnosed earlier can make.

Cancer can be difficult to diagnose, and these stories raise a number of questions. How can we empower and support people with unusual or persistent symptoms like Lilian who are too busy and sometimes afraid to see their doctor? How can we make GPs more accessible and support them to spot potential cancer symptoms in people like Richard earlier? How can we offer people the advice they need to reduce the barriers to screening, so they can have outcomes like John?

We’re exploring these questions through research, some of which features in this recent haul of new papers, and bringing together world experts to discuss it all at events such as next week’s NAEDI conference. Crucially, alongside those experts, are the patients themselves.

Cancer survival in the UK has doubled in the last 40 years, but we still lag behind the best-performing countries in the world. We must do more to learn from patients like Tom, John, Richard and Lilian.

And we must use that knowledge to help diagnose more people earlier and treat them more effectively to give them the best possible chance of surviving cancer.

Grace Redhead is an early diagnosis officer at Cancer Research UK

• If you’re affected by any of these issues and want help and support, you can visit our patient information pages, contact our Cancer Nurses, or join our Cancer Chat support forum where you can share your experiences with others.
• Want to get involved? There are lots of ways that you can volunteer your time to help us to beat cancer, including helping to raise cancer awareness and working as an ambassador to help roll out our political campaigns in your local community

We want to hear directly from people affected by cancer and are continually identifying other opportunities for you to get involved and influence our work. Email your queries or interest to [email protected]