These are the words of Howard, husband to the late Pamela Campbell-Morris, a devoted campaigner for raising awareness of prostate cancer among men from Black African and Caribbean communities.
He lives by this mantra that his late wife championed to help encourage more men from their community to think about prostate cancer, get early screening, and talk about it if they get a diagnosis.
This drive is to help break down the barriers preventing more men from getting diagnosed earlier, increasing the numbers getting treatment sooner and therefore having a much higher chance of surviving to see their children or grandchildren grow up.
Delving into our DNA
Genomics is the study of the complete set of our DNA (including all our genes) and how this information can be applied to treating certain diseases. Recent studies in this field have revealed that our genetic information can be involved in our risk of developing prostate cancer. 1 in 8 men from the white population will develop prostate cancer. This risk is significantly higher within the African/African-Caribbean population, with 1 in 4 men developing prostate cancer during their lifetime.
This is why a new project based in towns and cities across the East of England is looking to harness the potential of genomic medicine to help tackle the health inequalities we see in prostate cancer.
The United Against Prostate Cancer project is being run by the NHS East Genomic Medicine Service Alliance, part of the NHS Genomic Medicine Service, in partnership with B’ME Against Cancer, ProstAid and the Centre for Ethnic Health Research.
One of the core elements of this collaboration is community engagement and involvement. This combines events with awareness sessions on prostate cancer, myth-busting genetic testing and what it can show, all rounded off by a dominoes tournament. The aim is to create an inclusive and safe space for men from these communities to discuss their concerns, family history, signposting options and encourage them to get early screening.
If a man is diagnosed with prostate cancer and is found to carry a genetic alteration that may have triggered it, family members at risk can be offered tests to see if they carry the same alteration. If they do, screening and preventative measures can be offered to be able to catch tumours at the earliest opportunity which will mean earlier treatment, better outcomes and a much higher chance of getting the all-clear.
Peer-Patient Champions are another vital part of this programme, sharing their personal experiences of prostate cancer and genetic testing. Lloyd was diagnosed with prostate cancer in 2021 and has a family history of the condition.
He now encourages other men to come forward, talk about their condition with their families, and help them access genetic testing. “I know that 1 in 4 black African Caribbean men will be diagnosed with prostate and are twice as likely to die as a result of this condition. I, therefore, know how important it is to increase awareness in the community so that early detection can improve survival. Because we are all genetically diverse, and most of the treatments are formulated for the white population, I believe it is important that black men are encouraged to take part in genetic research and clinical trials” he added.
Professor Bola Owolabi, NHS England’s National Director for Healthcare Inequalities, recently attended a community event in Nottingham to see first-hand what the project is working to deliver. Bola met community champion Sylvester ‘the Cat’ who was diagnosed with prostate cancer and found to carry a gene change that meant he was much more likely to develop it. After his diagnosis, he discussed this with all his friends and took some drastic actions: “I drove round to my friends’ houses and told them all to get in the car and get tested…it was really important to talk about it.”
Watch a short film of Bola’s visit:
Reducing health inequalities
The hope is this project can help tackle the health inequalities we see in prostate cancer and ensure more men of Black African and Caribbean descent are diagnosed sooner and start treatment earlier.
It builds on the work of the NHS Genomic Medicine Service that is harnessing the potential of genomic medicine to deliver better care and harness the power of data to help deliver more equitable care and tackle health inequalities as outlined in Accelerating genomic medicine in the NHS.
The programme is currently only running in the East of England, but if it proves to be effective in encouraging more men to come forward for testing, it could be applied in other regions of England.
Be familiar with the signs of prostate cancer, which can include:
- The need to pee more often, especially at night
- Finding it hard to start or stop peeing,
- Peeing before you can make it to the toilet
- Blood in your urine (less common)
- Pain in your back, hips and pelvis (less common).
Men can also come forward for early screening with a Prostate-Specific Antigen (PSA) test, a simple blood test which can help determine if they may be issues with your prostate. To find out more about this please speak to your GP.
Delivering the best care in the NHS is only possible if all patients can access equitable and timely treatment, no matter where they live or their background. This project demonstrates that the growing field of genomics can become another important tool in helping us tackle health inequalities wherever we find them.