Black with blood cancer
On this page, we explore experiences of blood cancer for people in the Black community. Find out what you need to know about blood cancer, and where to get help.
Why Black with blood cancer?
There are health inequalities in the UK that affect Black people’s experience of blood cancer, from diagnosis to treatment and beyond. Recent research reports that:
- 6 out of 10 Black people in the UK (60%) do not believe their health is equally protected by the NHS compared to white people. (Clearview, 2020)
- Ethnic bias and racial discrimination lower the standards of care Black people receive, and lead to higher mistrust of the healthcare system. (Clearview, 2022)
- Black people in the UK are less likely than white people to take part in a clinical trial to treat blood cancer. (Smart, 2021)
- Not enough Black people are registered to donate stem cells. So Black people are less likely than white people to find an unrelated matched donor for a stem cell transplant. (ACLT and Anthony Nolan)
Know the symptoms
Speak to your GP if one or more of these symptoms lasts a long time or isn't normal for you.
The next step would usually be a blood test. Your GP should give you one. Call us for support if you don’t feel your concerns are being taken seriously.
Symptoms of blood cancer don't vary between ethnic groups, but some symptoms look different on different skin tones. It’s important for any healthcare professionals you see to understand this.
For example, pallor, caused by a lack of red blood cells, can be checked by pulling down the lower eyelid. The inside will look pale pink or white rather than dark pink or red.
Read our information about the signs and symptoms of blood cancer, including symptoms on black and brown skin.
“I want to take my diagnosis and make something good out of it. That means stepping out of my comfort zone and using my experience to raise awareness of blood cancer, especially among the black community.”
Are you Black and have you been diagnosed with blood cancer? If so, you could help us design new blood services that are created with and for your community. Find out how you can input here: Help design new services for Black people with blood cancer.
Types of blood cancer
There are over a hundred types of blood cancer, but these are the five main ones:
- leukaemia
- lymphoma
- myeloma
- myelodysplastic syndromes (MDS)
- myeloproliferative neoplasms (MPNs)
Anyone can get blood cancer, but some types are more common depending on things like age, sex and ethnic background. We don't know why.
One type of blood cancer, myeloma (sometimes called multiple myeloma) is almost three times as common in Black people. But awareness in the community is very low.
Myeloma affects plasma cells in your bone marrow and can cause a range of symptoms including severe pain in your back, ribs or hips. Find out more about the symptoms of myeloma.
“I was called in to discuss my results and I remember that like it was yesterday. I went there with my wife; we sat down and were told ‘we have diagnosed you with multiple myeloma’ – I had never heard of it.”
Stem cell transplants
A stem cell transplant is a treatment that can cure some types of blood cancer.
Some transplants use your own blood stem cells, but some people need a donor (or allogeneic) transplant using cells from another person.
If a donor stem cell transplant is an option for you, your hospital team will look for a suitable donor whose tissue is a good match for yours. They will start by testing any siblings you have and may test other relatives.
If none of your relatives are a good match, your hospital team will look for a donor on the blood stem cell registers, where people sign up to donate stem cells.
It can be harder to find an unrelated matched donor if you are Black or of mixed heritage. People are more likely to match with donors from a similar ethnic background, and fewer people who are Black or of mixed heritage are signed up to donor registers.
Charities like the ones listed below are working to raise awareness of stem cell donation in the Black community and can offer information and support:
You can also contact us.
If you are a family member or friend of someone with blood cancer, you can register to donate stem cells through any of the organisations above. Even if you are not a match for your loved one, you may be able to help someone else desperate for a transplant to save their life.
Coping with hair loss
Some treatments for blood cancer can cause your hair to get thinner and fall out. It’s understandable that a lot of people are upset by this, especially as hair has particular cultural and historical relevance in the Black community.
Hair is part of our identity, so to lose it, you lose so much - your control and choices over how you look.
- Yvonne, diagnosed with AML in 2018
Kinky and curly hair is more fragile and prone to breaking than straight hair. It may help to avoid relaxers, heat and strong products while you're having treatment.
You may also want to consider lighter lotions and oils that are gentler on your hair. If you cover your hair at night, continuing to do so with satin-lined bonnets and headwraps will also help protect your hair and soothe your scalp.
We have more information about caring for Afro-textured hair during blood cancer treatment.
Although we understand that the NHS is working to improve things, you may still find it hard to get a suitable wig on the NHS. We have information about finding an Afro-textured wig and other practical ways to manage hair loss.
“I said to the children ‘you can paint my head - you can use glitter and do whatever you want and that will help my hair grow back.’ It made it okay to talk about my hair not being there. Six months later it started to grow back."
Practical help
If you or a loved one have blood cancer or are waiting for a diagnosis, there are a few ways we can help:
- Our support service team can talk you through the conversations you’d like to have with your GP and other medical professionals.
- Our online and free printed information can help you make sense of your diagnosis, explore possible treatments and understand the future a bit better.
- Our online community forum offers a safe space to share how you’re feeling with people who understand.
- Our clinical trials support service can help you access the latest treatments for your condition.
Clinical trials
Taking part in a clinical trial can give you access to new treatments that aren’t otherwise available.
Our clinical trials support service can help you understand what trials are, what’s available in your situation and whether it’s the right thing for you. And if you join a trial, we’ll support you through it.
Making decisions about clinical trials
See what Advanced Nurse Practitioner Millie has to say about clinical trials, the barriers, the myths and asking the right questions.
The Blood Cancer Action Plan
Blood Cancer UK is working with people affected by blood cancer and clinicians to understand differences in blood cancer care and write recommendations on how to improve these inequalities.
We’ll be sharing our report with key decision makers in government and the NHS in the second half of 2024.
Find out more about the Blood Cancer Action Plan.
“We talk about being on this team that we wouldn’t have chosen to be on, but that now we’re on it, we’ve met some amazing people and it’s opened up new opportunities and ways of seeing the world. I now share my story so that it may help someone else.”
To share your story, please email the health information team at [email protected] with the subject line: "Black with blood cancer"
Other places to get support
- Cancer Black Care (CBC) provides support, education and advocacy for all those living with and affected by cancer, with an emphasis on Black people and people of colour.
- Cancer Education are dedicated to providing support to the Black, Asian, Minority Ethnic and Refugee (BAMER) communities including a helpline, educational resources and complementary therapies.
Are you running an awareness event?
If you’re running an event about blood cancer for your community, we have information and display materials you can use. Order our leaflet Let’s talk blood cancer and other free resources from the Blood Cancer UK Shop.
