Devastating impact of delayed cancer diagnosis – Lessons from a true story.

Jun 24, 2020 | Cancer Diagnosis

Over the past decade, cancer mortality rates have decreased dramatically across the board, as the one-year, five-year and ten-year survival rates for all types of cancer has improved (office for national statistics). Since 2001, the one-year survival rate for all cancers has increased from 62% to 72.8% (in 2016).

Despite the improvement in cancer care and survival rates, still many cancers are often diagnosed later in the disease progression, which, in turn, decreases the chance of survival. A report by the All.Can Initiative found that 21% of UK cancer patients (one in five) surveyed had to wait more than six months before receiving the correct diagnosis[1]? Furthermore, four out of ten UK cancer patients are misdiagnosed at least once before the correct disease is identified.

Research from Cancer Research UK (2018) discovered that of the 356,000 people diagnosed each year in the UK with cancer, 22% of them (78,320) only had their cancer identified at A&E. Moreover, 71% of these 78,320 patients said they had previously visited their GP at least once, expressing concerns about symptoms linked to their cancer. This report shows that the UK healthcare system consistently misses opportunities to catch cancers early, resulting in patients living with their cancer for longer, receiving diagnosis and treatment later, and having lower chances of survival – if their cancer has increased in aggressiveness during the wait for correct diagnosis.

It is evident that delayed diagnosis not only impedes the patient beating their cancer, but also affects their quality of life throughout the diagnosis and treatment process, by adding unnecessary stress and uncertainty.

Team YouDiagnose always strives to get first hand information from real-life incidences to get a deeper understanding of patients’ experience of misdiagnosis. From all the people we spoke with, Beth’s story struck us as the most traumatic, which glaringly highlighted the flaws with the current healthcare system.

Beth’s story

Beth Purvis, a 39-year-old mother of two from Essex, was misdiagnosed in 2014 with this dreadful disease. After experiencing anal bleeding, a change in her bowel movements, occasional vomiting after eating and stomach discomfort, Beth decided to visit her GP. Her GP informed Beth that she was suffering from IBS and an anal fissure, but due to her young age, she shouldn’t be overly concerned.

Unfortunately, this was not the case, and two years later in 2016, Beth made a visit to A&E expressing symptoms of what she thought was an anal prolapse when part of the rectum protrudes from the anus. It soon transpired that this was not the case, and instead was due to a large tumour in her rectum. Her earlier symptoms had been of bowel cancer, not of IBS.

At the point of correct diagnosis, Beth’s cancer had reached stage 4 – which made it more challenging to treat and lowered the chances of survival.

It took 12 rounds of chemotherapy and a colectomy, an invasive surgery where the affected part of the bowel is removed, to remove the bowel cancer. However, in November 2017, due to the delay in diagnosis, Beth was delivered the devastating news that cancer had already spread. She told the independent; “I had ten nodules across both lungs and I was told it was inoperable and incurable.” Despite the damning prognosis, doctors managed to remove the nodules but however, they have been clear that they expect cancer to return.

Despite being failed by so many, Beth has remained incredibly positive and strong in the face of adversity. She has used her own harrowing experiences to help support others facing bowel cancer diagnosis & treatment and has campaigned for better tests for bowel cancer, as well as promoting earlier diagnosis and screening. Beth carries out her campaign mostly through her Facebook page, “BowelWarrior” and helps promote bowel cancer awareness and fundraisers, using her experience to help others.

If you wish, you can follow her story firsthand via the link above, or give her support in her endeavours by donating to one of the many charities she works alongside and supports.

We had the fortune of interviewing Beth, as she told us she was always keen to support companies or organisations that are helping in the fight against cancer. The full interview is as below:

Responses have not been edited or changed

YouDiagnose Interviewee – Beth Purvis

Interviewer – Mr Ben Cheetham

Firstly, for context, could you give me a brief overview of your experiences of misdiagnosis and how they affected your life at the time?

I went to my GP with bleeding from my bottom, change in bowel habits, occasional vomiting directly after eating and trapped wind type discomfort. My GP diagnosed IBS and anal fissure, it wasn’t until two years later that I found that I had been misdiagnosed. At the time of the misdiagnosis, it didn’t really affect my life greatly as the symptoms were not debilitating. It wasn’t until I got the correct diagnosis that I realised that the damage had been done.

At the time of your (incorrect) diagnosis, did you have a feeling that something wasn’t right? If not right away, did it dawn on you later that the doctors’ diagnosis might not have been correct?

Deep down I think I knew there was something more serious going on but who was I to question someone with a medical degree and training when I had none? Also, I wanted to believe it wasn’t serious and it was a relief to be told it wasn’t serious. Also, I felt the doctor would think I was wasting her time if I went back again.

Did you take any action to confirm your beliefs that your diagnosis or treatment may have not been correct? If so, what was that?

I did not take any such action.

Do you think AI-led diagnosis and treatment can give a better chance to the process of cancer diagnosis?

Yes, I think this would have empowered me with information to be able to question my GP.

Do you believe that artificial intelligence and machine learning can help assist human doctors in their duties and improve healthcare around the world?

Yes, I believe it can help, although it would only be as good as the information available to it which means people have to be open about the information they provide to it irregardless of their own biases.

Finally, can you write a couple of lines about your view on AI-led services?

Anything that helps prevent others ending up in my shoes is a good thing. If people can be diagnosed early, not only will their quality of life improve but potentially their life expectancy too.

Conclusion

Beth’s case demonstrates the severity of the issue around cancer misdiagnosis and delayed diagnosis within the NHS. With a cash strapped healthcare system and a worldwide shortage of doctors, the issues with misdiagnosis and malpractice may be exacerbated, if we don’t act to support doctors, the healthcare system and patients.

We aim to offer this support to the area of cancer care. We hope to be able to support and empower patients, doctors and the families affected by cancer, and believe we can help improve the disparity in cancer care worldwide.

Help support YouDiagnose below and be a part of the fight against cancer!

References

Benbassat, J. (2019). Obtaining a second opinion is a neglected source of health care inequalities. Israel Journal of Health Policy Research, 8(1).

[1] https://www.all-can.org/

[2] https://www.dunmowbroadcast.co.uk/news/beth-purvis-from-elsenham-calls-for-better-diagnosis-of-bowel-cancer-in-young-people-1-5809815

[3] https://www.thesun.co.uk/fabulous/8348277/mum-told-young-bowel-cancer-tumour-ibs/

[4] https://www.independent.co.uk/news/health/cancer-diagnosis-missed-gp-referral-testing-treatment-report-nhs-a8665636.html

[5] https://www.cancerresearchuk.org/about-cancer/bowel-cancer

[6] https://webarchive.nationalarchives.gov.uk/20180904124112/https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/datasets/cancersurvivalratescancersurvivalinenglandadultsdiagnosed

[7] https://www.cancerresearchuk.org/health-professional/cancer-statistics-for-the-uk