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Let's beat cancer sooner

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

TomI 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

John MarshI got an invitation to the bowel cancer screening programme just after my 61st 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

RichardI 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

LilianIt 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 6th 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

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 engagement@cancer.org.uk

Comments

patrina young May 7, 2015

I would like GPs to have better ability to know when they don’t know and send pts on to someone who will! I was misdiagnosed with breast cancer – i was told not to worry and as it was what I wanted to hear I didn’t do anything until I was called for screening 8months later (although I admit I was going back to another GP in the practice after my holiday which was only a few weeks later) and by then it had progressed to stage 2. I have been cross with myself for not insisting on seeing someone else at the beginning (I know so much more now!) but also feel that I was let down by the GP. After all breast cancer is one of the most common ones around! I saw another GP in the practice after surgery so that she could stop this happening to anyone else and she said that I should have been automatically sent to a local ‘One Stop Shop’ – some joined up thinking required, I think. Needless to say I can never trust that particular doctor again

Mrs A Poyser April 28, 2015

I think GP’S ought to be trained better to diagnose cancer. When I went to my practice in Stafford and said i was uncomfortable and my breast hurt to touch I was told ” breast cancer doesn’t hurt ” well it did and I had it…

Roz Fitzgerald April 25, 2015

I looked at myself in the mirror and thought ‘that doesn’t look quite right’, I found no lumps or bumps so left it a week before going to my GP. She couldn’t find anything either but as my mammogram was overdue she referred me to the breast clinic with an appointment just a week later, by the end of that day I had been mammogrammed, ultra-sounded, biopsied and counselled!
I returned to the clinic a week later for confirmation of HEP 2 negative grade 3 cancer with a 60% spread of precancerous cells and two tumours. I started my chemo just 17 days later, and have had two cycles so far.
I am astonished at the speed of my diagnosis and start of treatment and can only hope that it’s truly successful. Thank you NHS and especially my GP and Addenbrookes Hospital.
However, I do believe that 3 yearly intervals for mammograms is a poor diagnostic and annual ultra sound screening would be more useful in early intervention. I like the idea of large employers offering screening to their employees for a small monthly contribution and would like to see the resurrection of well women / well man clinics.
I also believe that too much emphasis is placed on the patient proving their concerns, and while I’d hate GPs to be over run with neurotics I do think they should be prepared to dig a little deeper when a patient says ‘something is wrong but I don’t know what it is’.
Finally, and retrospectively, I had possibly been blind to early signs of my cancer. In the months before diagnosis I had lost some of my drive and energy, had some aches and niggles I had dismissed as ‘age related’, my tiredness as being winter blues. So listen to your body, if in doubt keep a journal for a couple of weeks and then go to your GP and be persistent, cancer is a sneaky disease and likes to con us all – don’t let it get the upper hand!

Lizzie Lloyd-Jones April 25, 2015

I went to my GP having found a small lump in my breast and thinking it may be just a cyst. I was seen by a consultant within 2 weeks. I was given a mammogram and ultra sound scan which did indeed reveal several cysts but also a very small shaded area nowhere near the cysts which when a biopsy was taken turned out to be cancerous! Fortunately it was very small – 5mm I think and stage 1. I was very lucky that the radiologist was so thorough and took a great deal of time checking and re checking the scan. But if I had not discovered the cyst in the first place who knows how long it would have been before the cancer revealed itself? It is so important to check your breasts regularly.

Stephanie Alden April 24, 2015

Interesting personal stories. Re the bowel cancer test it cannot be emphasised enough how easy it is to do and how not messy it is. On top of that it saved my friend’s life by providing really diagnosis. You really need to shout loud and long about how easy and clean it is. It’s easier than wiping your bottom.

Jane Monks April 24, 2015

As I am over 75 I am no longer routinely offered mammograms or bowel cancer screening. I find this bizarre as I believe the risks are just the same. I am able to ask for these, of course, but feel this should not be necessary. My GP practice tells me they can no longer screen for cervical cancer at my age, but I do not know why or what the risks are.

Madeline April 24, 2015

More screening tests are urgently needed eg for ovarian cancer which is more deadly and takes more lives than all other gynae cancers combined. At the very least nurses/GP’s should use opportunities such as smear test apptmts to check if women have any of the main (but often vague) symptoms and reinforce that smear tests do not check for any other gynae cancer than cervical as there is so much misunderstanding about this.

Val Hemmings April 24, 2015

It took 3 days of phone calls and finally waiting on the doorstep of my GP to get an appointment in Feb 2014. He prescribed antacids for my stomach pain. After a week of no improvement he organised an ultrasound scan. I waited a week for the appointment. I then phoned to find out when it would be only to be told I had to wait for another 3 weeks! The pain was increasing so I paid privately the next day. The GP rang me that afternoon to tell me I had enlarged Lymph nodes and a mass on my pancreas. He referred me to a Consultant gastroenterologist. Waiting another 2 weeks to see him was far too long as by now I had severe pain. I needed a CT scan but was told this could only be authorised by a consultant. I then paid privately after seeing him for the CT scan. It took altogether
2 months to get thediagnosis of stage3 Non Hodgkin’s lymphoma. Once I had the diagnosis my chemotherapy treatment and care under the NHS was fantastic and in September 2014, after a Pet scan was told the large lymph node on my pancreas was metabolically inactive. I am so very grateful to medical scientists. Just as an aside note I worked for 12 years ifor the Imperial Cancer Research Fund from 1966 to 1978.

Marelle Sierra April 23, 2015

I visited my GP in 2011 as I noticed a small pink lump on my ankle. She told me it was nothing to worry about, only a pyogenic granuloma. 3 months later it had grown, and I felt it was becoming ugly, so asked another GP to remove it. He did so and it transpired it was a melanoma over 4mm thick by that time, and ulcerated. GPs should never take chances with anything that looks at all suspicious.

Carole Grant April 23, 2015

GP’s need to take patients family history and concerns seriously. I went to the doctor after blood appeared in my stools and explained that my mother had died from bowel Cancer in her 40’s. After an examination I was told I probably had piles and to buy cream from the chemist. A few months later I saw another doctor as there was no improvement and a colonoscopy showed a Cancer was present. Five years later and after 18 months of aggressive treatment I still feel upset and anxious about the initial diagnosis.

Joyce Gustard April 23, 2015

I went to the Dr in Aug 2009 with sore breast. Eventually diagnosed as mastitis. After taking antibiotics another Dr decided to send me for tests. Breast cancer was eventually ruled out but was diagnosed with non Hodgkins Lymphoma in November..by then stage 2. Had 6 lots of chemo, scans, some side effects and secondary infections. In January 2015,was given the final discharge. Fantastic, cancer is treatable..take it a day at a time.

Barry West April 23, 2015

Our closest and oldest friends John and Cath have recently been devastated to receive the news that John has terminal pancreatic cancer after months and months of tests which kept saying he was clear of cancer. Why is this particular cancer so difficult to diagnose even when it is plain there is something seriously wrong with the patient? (John lost 40% of his body weight within 12 months)

Mr Brian J MacKintosh April 23, 2015

excellent information very easy to read and understand.

Joy April 23, 2015

My story is very much like Elinor’s. I was diagnosed in April 2013 with breast cancer which was stage 2. It was picked up on a routine mammogram, I was also not able to feel the lump, in less than three weeks I had a lumpectomy and all my lymph nodes were removed as well. The treatment that followed was 6 cycles of chemotherapy, 15 sessions of radiotherapy, 18 cycles of Heceptin and 5years of Tamoxifen, but that was 2years ago now, and I feel fine, it’s always there at the back of my mind, but you learn to cope. If it wasn’t for the routine mammogram, which was my first as I was just 50 years old, who knows what could have happened, and the breast nurses do not get enough credit for the work they do, always at the end of the phone if needed, very helpful.

Sharon Black April 23, 2015

My cancer was found by myself and presented itself as a lump. I was only 40, so had not reached the age for routine mammograms. When I did have a mammogram it did not show up, so I had an ultrasound and there it was.

Elinor April 23, 2015

I think people must take responsibility for their own bodies and have all the screening appointments that are offered. I had breast cancer in 2011, discovered on a routine mammogram. I could not have felt it myself and it could only be detected on a mammogram or ultrasound. If I had not kept that appointment I would not be as fit and well as I am today. I had a lumpectomy and radiotherapy. Thank you NHS!

Kevin Martin April 23, 2015

I feel early detection could be greatly improved by providing employers with up to date training and diagnosis screening equipment, This cost could be funded by the employer and local authority with the potential reduction in costs from early detection and a reduction in lost work day cases due to treatment in the long run paying back the initial outlay, As a selling point employers could offer advanced screening to employees for a monthly subscription from there salary.

Linda April 23, 2015

Would have helped my sister if she had been told had lung cancer when hospital knew 16 months before telling her…not happy at all.

Roger April 23, 2015

Its great to hear about people who have been cured, especially John through the bowel screening. I hadn’t realised that the screening tests could detect the cancer at such an early stage. Always thought that it would be at a later stage when blood could be detected in the samples. Its certainly worthwhile taking part.

mick April 23, 2015

My cancer diagnosis took months for my GP to do anything…around 4 visits spread over several months …he even said there was small possibility of cancer on the second visit…not impressed..

Audrey Davison April 3, 2015

I actually asked my GP if it could be Cancer. He said no. An MRI scan would have detected the Cancer that had spread to my spine’ a secondary from Breast cancer, that had not even been detected even though I never missed a routine mammogram. I visited my GP numerous ime throughout 2012 about back pain.