Needing to go to the toilet more frequently? Rushing to the bathroom in the middle of the night, struggling to go, yet feeling like your bladder is still full only minutes later?

This may sound familiar, especially as you get older, and is often not a major cause for worry. However, for some, these could be possible symptoms of prostate cancer and may prompt a call to the GP.

What happens in that appointment may vary, and this is something researchers are keen to change to help ensure patients the best outcomes possible.

What we know so far

More than 130 people are diagnosed with prostate cancer in the UK every day. It can affect cis men, trans women and non-binary people assigned male at birth. However, the disease is widely acknowledged to be more common in Black men.

Dr Tanimola Martins is a postdoctoral Research Fellow at the University of Exeter

Our understanding about why is growing, and one academic interested in the area is Dr Tanimola Martins, a Cancer Research UK postdoctoral research fellow at the University of Exeter.

Martins and his team previously found that, when asked to imagine they had possible prostate cancer symptoms, Black men were less willing than White men to opt for investigation in primary care – those first points of contact with the healthcare system.

Given that a timely visit to the GP can help with diagnosing cancer at an early stage, when it is more likely to be treated successfully, Martins and his team set out to explore this further in a real-life setting.

“By working to understand ethnic differences in primary care use and experiences of men with possible prostate cancer, we can work towards ensuring those most at risk have the best chance of surviving their disease,” says Martins.

They worked with GP practices to identify patients who had experienced relevant lower urinary tract symptoms in the previous 6 months and sent them questionnaires about their symptoms and primary care experience. Of the 274 men who responded, 23 were also invited for face-to-face interviews.

And, in a study published earlier this year, they uncovered some important differences in people’s experience of visiting the GP.

Communication breakdown

A typical GP appointment will start with the symptoms that brought someone in. If those could be prostate cancer, the next steps could involve a test or examination, such as a digital rectal exam (DRE) or a prostate specific antigen (PSA) test that can help diagnose prostate cancer.

In Martins’ study, however, there appeared to be a breakdown in this GP-patient communication.

Although the results showed no evidence of differences by ethnicity in the number of men reporting being offered a DRE overall, a smaller proportion of Black men (47%) than White (72%) reported being offered it during their first appointment.

Additionally, when interviewed, some Black men expressed uncertainty about whether they were offered PSA testing. They recalled being asked to give blood but were unsure what this was for.

Somewhat unsurprisingly then, a larger proportion of Black men were left feeling dissatisfied. Many also felt uncertain about what their problem was, and how it was being managed. This was not the case for Asian and White men. Many were satisfied with the information and management offered by the GP, with clear plans for next steps.

Though further research is needed to determine why some Black men may be experiencing these differences, Martins is keen to stress that this highlights the need for safety netting, particularly among at risk groups. This involves ensuring patients know when, why and how to book a follow-up appointment should their symptoms persist, change or worsen.

He says: “Just because nothing is found, it doesn’t mean the symptoms will stop or that there isn’t a problem. GPs know that the majority coming forward with possible symptoms are unlikely to actually have cancer, but these men come in thinking the worst, and better communication could help reassure them.”

GP’s perspective: “Don’t be afraid to ask questions”

Dr Sam Merriel, a GP in the South-West of England, comments: “It’s really hard to draw firm conclusions from this as it was a small study, but it’s certainly an important area to look into.”

He also agrees that there is room for improved conversation between patients and GPs.

“For most it won’t be cancer, but we’d prefer to see patients and rule this out. And don’t be afraid to ask your GP questions if you feel uncertain.”

Some useful questions to ask your GP during initial appointments for prostate cancer symptoms:

  • Do I need tests? What will they involve?
  • When will I get the results and who will tell me?
  • Do I need to see a specialist? Is it urgent?

Follow up questions to ask if your GP doesn’t think you need any tests or a referral:

  • Can you explain why I don’t need to have tests or see a specialist?
  • Is there anything I can do to help myself?
  • Do I need to see you again?
  • Who do I contact if my symptoms continue or get worse?

“Unfortunately, the tests currently available for investigating suspected prostate cancer have limitations and GPs are often very conscious of this,” adds Merriel. “So even if an examination seems normal and tests come back clear, we may still harbour suspicions because results can be falsely reassuring.”

“This could explain some of the dissatisfaction reported by men in this study and demonstrates the importance of telling patients to come back if their symptoms change, or if they are not getting anywhere with the things being used to try and treat them.”

Encouragingly, he says, research into how to improve prostate cancer detection is underway. Until then, he encourages his colleagues to use their clinical judgement to follow up on every suspicion and explain the course of action to patients.

Barriers for Black men

The researchers also found that a larger proportion of Black than White and Asian men acknowledged not informing their GP about a number of their symptoms. In interviews, they attributed this to the relatively short consultation time, embarrassment, and not wanting to waste the doctor’s time.

Some men also said they would feel comfortable disclosing more about their symptoms if they were given the option of seeing a male health professional.

One patient noted: “You don’t want to make a big drama of little things in case…it turns out to be nothing. [T]his is what the embarrassment is sometimes, you feel that you could be wasting other people’s time – and your own as well.”

Martins speculates that these factors could be playing a part in Black men’s differing experience of primary care, for example, the disparities in testing that were found. And, in turn, could go on to impact longer term health outcomes within the community.

Alfred’s story: “Embarrassment could cost you your life”

Alfred Samuels was diagnosed with stage 4 metastatic prostate cancer in 2012.

Part of the problem with diagnosing prostate cancer in primary care is that a lot of cases don’t have any symptoms early on, which can be why many cases are diagnosed at a late stage (stage 3 or 4).

This was the case for Alfred Samuels who received his prostate cancer diagnosis following an MRI scan to investigate an excruciating pain which radiated from his lower back and into his leg.

When the results for his scan came in, Alfred was told that he had stage 4 metastatic prostate cancer and it had spread to six locations in his body. This was in 2012.

Commenting on receiving his diagnosis, Alfred reports a similar experience to several patients in Martins’ study.

“Although my GP did explain the next steps, along with the recommendation that I could come back to see him, it all felt quite rushed.”

Alfred believes that more awareness programmes co-run by Black men with the disease are needed to normalise these conversations and overcome embarrassment within the community.

He warns: “Prostate cancer can be treated, but this embarrassment could cost you your life.”

Where do we go from here?

Though not definitive, Martins’ work brings to light some of the barriers that could be contributing to health inequalities when it comes to Black men and prostate cancer. And he’s keen to keep digging.

“As both a Black man, and a researcher, it’s my desire to continue researching inequalities in primary care diagnosis and outcomes of common cancers to help inform clinical practice and policies aimed at overcoming these.”

In the meantime, taking simple steps to tackle some of the known hurdles to communication early on could prove vital in improving outcomes in the long run. These include empowering patients with information, facilitating shared decision making, and breaking down the stigma around discussing symptoms.

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