Black women from Caribbean and African backgrounds are up to two times more likely to receive a late-stage diagnosis for some cancers than White British women in England, according to new analysis by Cancer Research UK and NHS Digital.*
The review of cancer data from NHS Digital, published today in BMJ Open, revealed that ethnicity is a significant factor in stage of diagnosis for women in England with breast, ovarian, uterine, non-small cell lung cancer (NSCLC) and colon cancer, and for men with prostate cancer.**
The analysis showed that:
- Caribbean and African women are more than twice as likely to be diagnosed with late-stage uterine cancer than White British women.
- Caribbean women are more likely to receive a late-stage diagnosis for NSCLC (62% more likely), ovarian (48%), colon (37%), and breast (27%), cancers than White British women.
- African women have higher odds of being diagnosed with late-stage ovarian (85% more likely), breast (71%), and colon (42%) cancers.
- Asian women, referring to those from Indian, Bangladeshi and Pakistani backgrounds, are more likely to receive late-stage ovarian (21% more likely) and breast (12%) cancer diagnoses.
- There were no significant differences found between Chinese and White British women.
Cancer Research UK said there were many possible reasons behind the late diagnoses, including poorer symptom awareness, delays in seeking help and having to present to the GP multiple times before being referred for tests.
Fear of dying from cancer and beliefs that cancer is untreatable may also contribute to late-stage diagnosis in women from ethnic minority backgrounds, as well as lower screening uptake.**** The charity recommended the government should increase cancer awareness as well as screening uptake among ethnic minority groups and make it easier for them to see the GP and get the tests needed to diagnose cancer earlier.
Cancer Research UK’s chief executive, Michelle Mitchell, said: “Everyone deserves the best cancer care, from diagnosis to treatment. The fact that women from Black and South Asian backgrounds are more likely to be diagnosed with late-stage cancer, when treatment is less likely to be successful, is deeply troubling.
“More concerning still, is that we know the number of cancer cases diagnosed in ethnic minority groups is likely to grow over time. Meaning without any action, this gap will only continue to widen.
“Whilst the Health and Social Care Secretary’s recent decision to drop its promised 10-year cancer plan is disappointing, it is now critical that the new ‘catch-all’ major conditions strategy sets out how the Government will reduce the inequalities that persist in cancer care.”
When cancer is diagnosed matters. Catching cancer early, before it has the chance to grow and spread, greatly increases the chances of it being successfully treated. For example, more than 9 in 10 people diagnosed with colon cancer at its earliest stage survive their disease for 5 years or more, compared with 1 in 10 when diagnosed at the latest stage.***
However, a biennial survey carried out by YouGov for Cancer Research UK in September 2022, found that women from an ethnic minority background were more likely to report they didn’t know any warning signs and symptoms of cancer compared to White women (23% vs 12%).*****
It also found that women from an ethnic minority background were more likely to delay or avoid speaking to a medical professional than White women due to feelings of embarrassment and lack of confidence talking about their symptoms (10% vs 5% and 10% vs 4%, respectively). They were also more likely to be worried about how their pay/earnings would be affected if they needed further tests or treatment (5% vs 1%) and to anticipate difficulties with remote consultations (10% vs 6%).
Though cancer rates are generally lower for most cancer sites in minority ethnic groups in England, this gap is expected to close over time. Evidence suggests that factors, such as obesity and smoking, in people from Black, Asian or Mixed ethnic backgrounds could become similar to those in White people in future – leading to higher rates of cancer in some groups.******
Cancer Research UK’s head of cancer intelligence, Jon Shelton, who is an author on the study said: “A cancer diagnosis is a scary thing. But the earlier it’s spotted, the better your chances of surviving. That’s why tackling known barriers to help seeking, whether that’s fear or difficulty accessing a GP, is so important – so more people come forward with symptoms.
“But we also need the Government to ensure primary care and diagnostic services are properly resourced. If people can’t get appointments that work for them, aren’t being referred for tests in a timely way or are stuck on waiting lists they will not see the benefits of early diagnosis. And we risk making these inequalities worse.”
For men, a link between ethnicity and stage at diagnosis was only found in one of the cancer types studied. Caribbean and African men were over 20% less likely to be diagnosed with late-stage prostate cancer than White British men, despite being at higher risk of developing the disease. This could be driven in part by targeted awareness campaigns for prostate cancer. More research is needed to understand whether overdiagnosis is a factor, and whether ethnicity impacts stage of diagnosis in other cancer types.*******
When Adobea Obeng was diagnosed with incurable breast cancer at 31, her first thought was: “I have a son, I can’t have cancer – who will bring him up?” The style vlogger opened up about her cancer experience on her YouTube channel, @itsdivinestyle, last spring to spread awareness and break down barriers in the Black community.
“When you think about cancer, you don’t really see a face like mine,” she said. “Representation matters. Going through cancer diagnosis and treatment can be a very isolating experience. Seeing other people who look like you and that you can identify with really helps when you’re having difficult times.”
Adobea, who is now 35 and lives in Romford, sought medical help three times over two years before she was diagnosed. In 2016, she found a grape-sized lump in her breast but was advised by a GP that she was young and so it was ‘probably nothing’. By the following year, the lump had grown to the size of a tangerine, so she went back to the GP but was again told not to worry.
By April 2018, the lump was even bigger, and she began experiencing severe back and chest pain, as well as trouble breathing. She went to hospital by ambulance but was sent home with painkillers. The pain worsened over the next two days, and she was again rushed to hospital – this time insisting on a CT scan.
Doctors found a 7cm mass in her breast and she was diagnosed with stage 4 metastatic ER-positive breast cancer. She started chemo two weeks later. Adobea says it’s important for people like her to talk openly about cancer, as there are many misconceptions and fears about cancer in the Black community.
“A lot of people within the Black community would dismiss or ignore cancer symptoms. It’s seen as a taboo subject and many people who have had cancer rarely talk about it,” she said. “We need more representation and open conversations about cancer and how it’s not a death sentence.”
It’s been four years since she was diagnosed with stage 4 cancer and Adobea, who is now receiving hormone treatment, is living life to the fullest with her son Fabian, 13. She doesn’t like to dwell, but she does wonder what would have happened if her cancer been picked up earlier.
Despite her experience, she encourages people to go to the GP with anything unusual, as catching cancer early can improve survival. “Be persistent,” she says. “You know your body best.”
This is Adobea’s testimony from her own lived experience. If you have signs and symptoms or anything you are worried about, see your GP, and persevere to get an appointment.
Alternatively, if you or someone close to you have been affected by cancer and you’ve got questions, you can call the Cancer Research UK nurses confidentially on freephone 0808 800 4040, Monday to Friday, 9am-5pm.
Note:
* Fry, A., White, B., Nagarwalla, D., Shelton, J., Jack, R. H. (2022). Relationship between ethnicity and stage at diagnosis in England: a national analysis of six cancer sites. BMJ Open. 2022;0:e062079. The paper will be available from http://dx.doi.org/10.1136/bmjopen-2022-062079 when the embargo lifts.
** In the past, incomplete national cancer registration data has prevented this type of analysis but reporting of both stage at diagnosis and ethnicity has improved in the last decade. Using data from NHS Digital’s National Cancer Registration and Analysis Service on cancers diagnosed between 2012 to 2016, researchers analysed nearly 697,000 cancer diagnoses in England across six cancer sites, adjusting for patient case-mix and using a granular definition of ethnicity where possible. The analysis was carried out as part of a research partnership between Cancer Research UK and NHS Digital.
*** In England, 93.1% of people diagnosed with colon cancer at stage 1 will survive 5 years or more, whereas this drops to 9.8% when diagnosed at stage 4. Source: Cancer Research UK. Early Diagnosis Data Hub. https://crukcancerintelligence.shinyapps.io/EarlyDiagnosis/
**** Black people are significantly less likely to be diagnosed with cancer via screening in England. Source: Martins, T., Abel, G. Ukoumunne O. C., Mounce, L. T. A., Price, S., Lyratzopoulos, G., Chinegwundoh, F. Hamilton, W. (2022). Ethnic inequalities in routes to diagnosis of cancer: a population-based UK cohort study. British Journal of Cancer, 863-871.
***** All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 2387 adults, of which 1242 were women. Fieldwork was undertaken between 20th September - 4th October 2022. The survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+).
****** Delon, C., Brown, K. F., Payne, N. W., Kotrotsios, Y., Vernon, S., & Shelton, J. (2022). Differences in cancer incidence by broad ethnic group in England, 2013–2017. British Journal of Cancer, 1-9.
******* In England, Black men were more than two times more likely to be diagnosed with prostate cancer than White men. Source: Delon, C., Brown, K.F., Payne, N.W.S. et al. Differences in cancer incidence by broad ethnic group in England, 2013–2017. Br J Cancer 126, 1765–1773 (2022). https://doi.org/10.1038/s41416-022-01718-5
It is also possible that for some cancers, overdiagnosis plays a role in the stage of diagnosis across different ethnic groups. Not all cancers behave in the same way. Some will spread quickly, and others are so slow growing they’ll never be the cause of someone dying. It’s when these slower-growing harmless cancers are picked up that they’re said to be overdiagnosed.