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Understanding the consequences of delayed or missed diagnosis of ‘below the belt’ bladder cancer

Posted: 08/06/2021

Reflecting on Bladder Cancer month in May 2021, Louise Taylor and Lyndsey Banthorpe, associate solicitors in the clinical negligence and personal injury team at Penningtons Manches Cooper, unmask the different types of bladder cancer and provide some informative advice about common symptoms and what to do if you think you have received a late diagnosis.

What’s the big deal?

In the UK, of 200 types of cancer, bladder cancer is the eighth most common cancer in men, and the sixteenth most common cancer in women. Overall, bladder cancer accounted for 3% of all new cancer cases in 2017 [1].

More than 20,000 people in the UK are diagnosed with bladder cancer each year and the statistics indicate that there is on average a five year survival rate and around 50% of cases will prove fatal. [2] Despite its prevalence and mortality rate, and the hard work of charities and the NHS to increase awareness and research, bladder cancer does not receive the coverage that it should. In many bladder cancer cases, a delayed diagnosis of a few months or even weeks can be the difference between a treatable condition and a devastating, if not fatal, outcome. Despite the female gender offering a survival advantage in most cancers, women are disproportionately less likely to survive bladder cancer than men due to factors including how they are referred (or not referred) for investigation and differences in treatment.  

Some clinicians working in this area attribute (in part) the lack of public awareness to the type of symptoms bladder cancer causes, which are harder to get people talking about and are not considered standard dinner table conversation topics: a ‘below the belt’ cancer, both figuratively and literally.

However, in October 2020, thanks to Tracey Emin (the renowned UK artist) bladder cancer was for the first time brought ‘above the belt’ to the metaphorical dinner table, and to the attention of the UK en masse. Emin, who has regularly been in the public eye for her controversial, feminist and thought-provoking artwork, once again made headline news, revealing to the Times [3] the intimate details of her battle with bladder cancer last year. Emin described, poignantly and without apology, the operation she underwent to remove the cancer, which ‘ravaged’ her body and left her with a stoma bag and no reproductive organs. Emin was told that she would have not survived had the cancer been detected any later.

Emin should be praised for her candid account of bladder cancer, but more needs to be done. The upshot of a lack of understanding and awareness, both by GPs and the general public, means that bladder cancer (particularly for women) is going undiagnosed or being diagnosed too late by doctors, resulting in life changing or fatal consequences.

This article hopes to inform those reading about the symptoms of bladder cancer, who it affects, when to demand referral for further investigations, and provide advice about whether you might have a claim for late diagnosis.  

So, what is bladder cancer exactly?

The bladder is a hollow muscular organ, able to store up to 500mls of urine, which is passed from the kidneys along narrow tubes called ureters. As the bladder fills up and the volume of urine stored increases, the muscular wall contracts and urine is passed along the urethra (water pipe) and, shortly thereafter, out into the Thames.

Cancer can be considered an uncontrolled growth of cells. Bladder cancers form in the lining of the bladder and the abnormal growth usually presents with bleeding. This appears in the urine (haematuria) and is one symptom indicative of bladder cancer.

Bladder cancer is a spectrum of disease; it is broadly described as either being located on the lining of the bladder (superficial or non-muscle invasive) or extending into the muscle of the bladder (muscle invasive disease).

The method of determining where a specific bladder cancer sits on the spectrum is by classification, according to grade and stage.

Grade of cancer
Grades relate to how controlled or uncontrolled the cancer cells are.

G3: the cells are out of control, with very abnormal and aggressive growth.
G2: moderately out of control.
G1: very controlled and non-aggressive cancer.

Stage of cancer
The stage (T) is how deep into the lining and wall of the bladder the cancer goes.

A G3 cancer can invade through the lining and wall of the bladder as it has no constraints. It will move from the lining (TaG3) through the lining base layer (T1G3) then into the muscle (T2G3) and to the outer bladder (T3G3) and beyond.

A G1 cancer will sit on the lining of the bladder (eg TaG11) and has not really got the ability to invade beyond this level.

A G2 cancer is a mixed bag, less predictable and can go either way.

What are the causes of bladder cancer?

Smoking is the number one cause of bladder cancer and there is a clear relationship between the number of years an individual has smoked and the development of the disease.

Exposure to carcinogens is another key risk factor and historically workers in the rubber and dye industry were affected; the link between bladder cancer and carcinogens was first established when it was noted to be common among workers using analine dyes in a German factory in the late 1800s.

Health and safety procedures have reduced exposure but anyone exposed to carcinogens is at risk: this includes mechanics, people working with textile dyes, printing, hairdressers and people working in the oil and paint industry etc.

Age and gender are also risk factors, with the risk increasing with age. Men are more likely to develop bladder cancer than women are, though within those numbers women are disproportionately more likely to be misdiagnosed or have their cancer missed (see below).

What symptoms should I be looking out for?

Common symptoms of bladder cancer include:

  • blood or blood clots in urine (haematuria);
  • pain or burning sensation when urinating;
  • frequent urinating;
  • feeling the urge to urinate throughout the day but being unable to pass urine;
  • waking in the night feeling the need to urinate;
  • lower back pain on one side of the body; and
  • pelvic pain.

The cardinal sign or red flag symptom for bladder cancer is visible haematuria (blood in the urine).

Campaigns such as ‘Be Clear On Cancer: blood in pee' [4] (NHS England) attempted to raise awareness of this issue, and had some success, but did not garner the broad public awareness that is required.

Referral for investigation of haematuria

National guidelines from NICE (National Institute for Clinical Excellence) stipulate that an individual over 40 presenting with haematuria should be referred for investigation and this should be completed within two weeks. About 10% of those referred will have bladder cancer.

Not all blood in urine is visible. Dipsticks are very sensitive and pick up nonvisible haematuria. Similar to visible haematuria, guidelines for referral of patients with nonvisible haematuria exist and patients should be referred for investigation if nonvisible haematuria is present in two of three samples, or if the patient has other symptoms, and a urinary tract infection (UTI) has been excluded.

However, despite this NHS referral pathway, only 45% of bladder cancers are diagnosed this way. The majority of bladder cancer cases are referred on standard wait time clinics, which are much longer.

Why are referrals delayed?

The reason that the two-week pathway is not followed is related to the presence of other symptoms, and very often patients are assumed to have an alternative diagnosis, including a UTI. Those symptoms are treated (particularly in women) with repeated courses of antibiotics over a period of months before referral for investigation, which is contrary to the guidelines, and diagnosis is delayed.

Similarly, for patients with nonvisible haematuria, the correct pathway is to exclude UTI or treat and then re-check and refer. The difficulties arise when GPs continue to prescribe repeated courses of antibiotics for suspected UTIs, without considering referral for further investigation.

Women are disproportionately affected by delayed referrals, and are more likely than men to be continuously treated for other issues commonly affecting women, including UTIs and menopause. However, the NICE guidelines are clear that anyone with unexplained visible blood in urine (haematuria) should be referred for further investigations in the two-week pathway and anyone with non-visible haematuria should be referred if a UTI is excluded.

Diagnosis and treatment

Once referred, bladder cancer is diagnosed using the following:

  • cystoscopy (a fibre-optic tube inserted along the urethra into the bladder); and
  • ultrasound scan if haematuria is non-visible or CT scan if haematuria is visible.

If cystoscopy or imaging detect the cancer, the next stage is to remove the tumour.

The technical term for this is a transurethral resection of a bladder tumour (TURBT), which enables any abnormal tissue to be removed and tested for cancer.

Tumours classified as non-muscle invasive tend to recur after removal and bladder cancer has the highest recurrence rate of any known cancer. To remove a non-muscle invasive cancer (TURBT, which is like a biopsy but the whole tumour is removed), very fine surgical instruments are passed along the urethra and the tumour removed.

Patients with non-muscle invasive disease attend hospital clinics for regular check-ups as often as every three months. A check-up is performed by passing a narrow fibre-optic scope along the urethra into the bladder to visualise and assess the lining: this is called surveillance cystoscopy.

Tumours classified as muscle invasive are treated in a different way. Muscle invasive disease is present in 25% of cases at presentation and requires removal of the bladder, which is called cystectomy. An alternative to cystectomy is radiotherapy and although there are no direct head-to-head comparisons, cystectomy has more favourable outcomes and is the gold standard treatment.

The costs associated with bladder cancer treatment, surveillance and if necessary repeat treatment are high, with bladder cancer being the most expensive cancer of all cancers to treat.

Why is bladder cancer delayed or missed?

As we know, patients with visible haematuria (blood in urine) should be referred by their GP on a two week suspected cancer pathway for investigation; this means that a specialist should see them in two weeks, but this only happens in 45% of cases.

For non-visible haematuria, a patient should be referred once a UTI is excluded (treatment for a UTI is complete and the patient is re-checked and referred if the non-visible haematuria is still present).

For the more aggressive forms of cancer, failing to refer a patient within the guidelines’ pathways can be the difference between a treatable or terminal cancer, or if not terminal, the difference between someone being able to keep their bladder and reproductive organs or not.

The second main cause of delayed diagnosis is related to TURBT. Once patients are referred to hospital for investigation, if diagnosed with cancer, there begins a 60 day window within which the patient must receive treatment. The problem arises when a patient undergoes TURBT, which is classified as ‘treatment’ and the clock is stopped. However, for many cases and especially patients with muscle invasive disease, the cancer pathway has not completed but, because they are no longer target tracked, they fall through the net and delays occur before definitive treatment. This aspect of delay is now very relevant to the environment created by the Covid-19 pandemic and increasingly, patients are presenting and representing with delayed diagnosis and delays in planned treatment.

Women and bladder cancer

A study in 2004 identified that there is a disparity in survival rates of women diagnosed with bladder cancer as compared to men [5].

Since then, further studies have looked at the different factors causing this disparity and one main factor is the difference in referral patterns for men and women. A UK study in 2013 [6] showed that females were more likely to have three or more GP attendances before referral for investigation for bladder or renal cancer than men were. In multivariable analysis, being a woman was independently associated with higher odds of three or more pre-referral consultations both with and without haematuria, which suggests that doctors interpret the clinical importance of haematuria differently in men and women. This study concluded that there are unequivocal gender inequalities in the periods for referral of urological cancers, and that there was a need to reinforce the existing guidelines on referral pathways as well as to develop new tools to improve the diagnosis of urological cancers of both men and women who present without haematuria.

A study conducted in the USA in 2014 [7] reported that the number of days women waited for referral following presentation of haematuria was significantly longer than for men, and the proportion of women with more than a six-month delay in bladder cancer diagnosis was significantly higher than for men. In addition, women were more likely to be diagnosed with a UTI and less likely to undergo abdominal or pelvic imaging.

A European study in 2016 [8] recognised that, despite gender disparity in diagnosis of bladder cancer having been understood for more than ten years, there were still no (and are still no) gender specific guidelines to address the gender survival disparity. This study considered areas of clinical practice that, if altered, could lead to a change in outcome and better survival rates for women. The study identified that patient education and streamlining referrals could help to improve survival in female bladder cancer patients.

Though attempts have been made to raise awareness of the symptoms of bladder cancer generally, it is submitted that not enough has been done to deal with the gender disparity in survival; it is entirely unsatisfactory that women are more likely to die from bladder cancer because of their gender.

There is an ongoing and active body of research which is continuing to investigate these issues and develop streamlined pathways, which is welcomed, but more action is needed.

What does a delayed diagnosis mean to me?

Early diagnosis of bladder cancer, when the tumour is less advanced and has not invaded the muscles controlling the bladder, can have a significant impact on the treatment offered to a patient as well as survival rates.

However, the impact of a delayed diagnosis is entirely dependent on the stage and grade of the cancer. A G3 cancer is the most aggressive grade of cancer and if this is delayed, it will progress to metastasis. A G2 cancer is less predictable in the speed and breadth of its growth. For an aggressive cancer, the difference of a few weeks could mean the removal of sexual organs and bladder where this could have been avoided or – worse - it could be a matter of life and death.

If you think that you or someone you know might have received a delayed or missed diagnosis of bladder cancer, and are considering bringing a legal claim for negligence, it is important to contact a specialist solicitor for an initial discussion to assess your options. Whatever the circumstances, they will approach your case with sensitivity and should be able to help you obtain answers as to what has gone wrong.


[1] Cancer Research UK (Accessed 16 March, 2021).
[2] Action on Bladder Cancer (Accessed 16 March, 2021).
[3] The Times: Tracey Emin on her secret cancer battle: ‘To get past Christmas would be good’ (Accessed 8 March, 2021).
[4] National disease Registration Service: Be Clear On Cancer: Blood in Pee campaigns, an overview of the final evaluation (Accessed 16 March, 2021).
[5] Madeb R, Messing EM: Gender, racial and age differences in bladder cancer incidence and mortality. Urol Oncol 2004; 22:86–92.
[6] Lyratzopoulos G, Abel GA, McPhail S, Neal RD, Rubin GP: Gender inequalities in the promptness of diagnosis of bladder and renal cancer after symptomatic presentation: evidence from secondary analysis of an English primary care audit survey. BMJ Open, 13 May 2013; 3:e002861.
[7] Cohn JA, Vekhter B, Lyttle C, Steinberg GD, Large MC: Sex disparities in diagnosis of bladder cancer after initial presentation with hematuria: a nationwide claims-based investigation. Cancer, 15 February 2014.
[8] Burge F, Kockelbergh R. Closing the Gender Gap: Can We Improve Bladder Cancer Survival in Women? - A Systematic Review of Diagnosis, Treatment and Outcomes. Urol Int. 2016; 97(4):373-379.

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