Mavis and Sasha re-opened the conversation about cancer in March 2021. This time the event was opened by Dr Rose Thompson, Chief Executive and Founder of BME Cancer Communities and Chief Executive and Co-Founder, Sistas Against Cancer. She shared her outstanding contribution and wealth of knowledge around the care and experience of diverse communities affected by cancer. This was followed by a lively panel discussion around cancer and cancer genetics to help us think about the question ‘does cancer affect us all equally?’
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Research Showcase
For our first research showcase Mavis spoke to some remarkable women about their work. There are exciting projects using genetics and genomics knowledge to answer many questions around health and disease. Yet each new application of the technology also produces and magnifies dilemmas around ethics and resource allocation. Sasha and Mavis learnt a lot through these conversation about the dilemmas and the complexity of diversity in genetics research.
This month Sasha and Mavis enjoyed hearing about the story of Sickle Cell and Thalassaemia. The event was introduced by Prof Dame Elizabeth Anionwu the first sickle cell specialist nurse in the UK. It was an enlightening afternoon spent reflecting on the experience of the Sickle Cell and Thalassaemia community and what that could teach us all about improving inclusion in genetics.
The Sickle Cell Society https://www.sicklecellsociety.org/
The UKTS https://ukts.org/
The Sound of Sickle https://www.instagram.com/tssuk_/
Our Journey, Our Story: History and Memory of Sickle Cell Anaemia in Britain 1950 – 2020 is available online at:
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Race, masculinity and genetic counselling.
During my conversation with Suresh Rambaran about Black men and prostate cancer I surprised myself by stating that I had never seen a Black man in a genetic cancer clinic, in the UK, in nearly 10 years of working in genetics counselling.
While it may be expected that less men seek genetic counselling for conditions which increase the risk of breast and ovarian cancer, there are genetic conditions that increase the chance of cancer for both men and women. Conditions like Lynch syndrome and familial adenomatous polyposis (FAP) syndrome that increase the risks of bowel cancer for example. I work in a diverse part of the country so even accounting for the expected differences, it remains both noticeable and curious to me that I cannot recall seeing a Black man for genetic counselling for any cancer condition. It is important to note that I have seen patients for a range of other non-cancer genetic conditions and although the numbers are often smaller than expected, I have seen Black men in these clinics.
Low numbers of men presenting in healthcare is well recognised. Men appear less likely to recognise symptoms, report them early or to adhere to screening. The health seeking behaviour of men with hereditary conditions that primarily affect women show similar trends though additional factors like being less likely to receive information or having lower risks of cancer can contribute to the differences observed.
For me, these issues raise questions about how personal and social perceptions of masculinity drive health seeking behaviour and even how they contribute to what genetic information is shared with men. The intersectionality of race and masculinity on health seeking behaviour has been considered for years. Studies have looked at the cultural norms, values and expectations that impact how men seek services. From the individuals we have spoken to through Genetics Engage we have heard that difficulties accessing services can be due to who professionals refer to specialist services like genetic counselling. Perhaps professionals may worry that patients might react negatively to referrals or at worst they may hold assumptions that they just would not benefit or be interested.
Reflecting on a month like Movember certainly makes me think about ways in which conversations can be had to better support men to engage in genetic services. Specific and tailored interventions just will not be possible without talking to Black men about what they want and need to offer services that improve their health.
Sasha
There is NHS data and charity data that confirms the poorer outcomes and later diagnosis of certain cancers in the Black population in the UK.
Information about the differences in experience, screening and diagnosis of cancer in Black people in the UK is publicly available from number of organisations. You can read more in the 2018 Race Equality Foundation briefing on ‘Cancer and Black and Minority Ethnic communities’ below:
http://raceequalityfoundation.org.uk/wp-content/uploads/2018/07/REF-Better-Health-471-1.pdf
There are good examples of efforts to address these inequalities. Increasing awareness and knowledge about risks and screening can empower people to ask for the health services they need. More culturally sensitive services and staff is also key in ensuring that people in the Black community can expect the same health outcomes of any other group in the UK.
If you need help and support you can also contact charities such as:
BME cancer communities (https://www.bmecancer.com)
Cancer Equality Care – (https://cancerequality.co.uk)
Can survive UK (https://can-survive.org.uk)
Sasha
Screening for the cancers common in the general population in the UK is offered through national screening programmes. This is usually for breast cancer, bowel cancer, cervical cancer and prostate cancer. They are all done at different frequencies and ages depending on your family history and sometimes ethnicity.
It is important that you attend screening when recommended and do self checks.
If particular cancers are more common in your family or you have a higher personal risk your GP, family history nurse or genetic counsellor can work out what screening you should be having and how often. This may be as frequent as every year.
Sasha
All hereditary cancers are different. The risks of passing on a faulty gene that increases the risk of a cancer can be as high as 1 in 2 ( 50%) but it can be lower too.
The risk of cancer varies. Talking to a genetic counsellor will help you to know: if the cancer in your family is hereditary, if there is a faulty gene that can be identified and what your chances of developing cancer may be.
Sometimes the chance of developing a hereditary cancer is as high as 80 % sometimes it is as low as 1%. This chance can be affected by the specific gene, your age, your diet, whether you are a man or a woman amongst other factors.
Breast and bowel cancer are two of the most common cancers to affect people of African descent in the UK. Prostate cancer is also a cancer common in men. The risk of prostate is doubled in men of African and Caribbean descent compared to men of European descent.
The risk of cancers can be different based on the country or population you are from. People of African descent in other parts of the world may have different risks.
Although breast, bowel and prostate cancer are not usually hereditary, they can be sometimes. You should talk your GP if you are worried they may run in your family.
Sasha
Breast cancer and bowel cancer are the most common hereditary cancers seen here in the UK. In the general population about 1 in 10 women get breast cancer and 1 in 20 individuals get bowel cancer.
In families where this is hereditary the risk of getting a particular cancer can be as high as 8 out of 10. There are lots of genetic conditions that make it more likely to get cancer. Each condition is uncommon and caused by faults in different genes. Each faulty gene will only cause certain types of cancer.
Sasha
To mark Movember Sasha and Mavis decided to have a chat with Suresh Rambaran, a specialist nurse who has championed engagement and awareness of prostate cancer for Black , Asian and minority ethnic men.
Suresh kindly shared some links to other organisations you might want to check out.
Cancer Equality – https://cancerequality.co.uk/
Orchid (Male cancer charity) – https://orchid-cancer.org.uk/
Can survive UK – https://can-survive.org.uk/