Dedicated group champions black men with prostate cancer

Guy's and St Thomas' has launched a dedicated group for black men coping with the diagnosis and treatment of prostate cancer, to help combat the increased risk they face.

One in eight men will get prostate cancer but it's even more common in black men with one in four getting the disease.

The National Cancer Patient Experience Survey suggests that while experience of care is generally positive, black patients' have a poorer experience across a number of areas, including support received following diagnosis.

The Brother to Brother, Man to Man group was set up by Guy's Cancer and the South East London Cancer Alliance (SELCA), to address this and improve support for black men with prostate cancer. The project is funded by SELCA.

Jonah Rusere is a urology advanced nurse practitioner at Guy's and St Thomas' and runs the group with Amelia Barber, Grace Zisengwe and Prince Sanyang. He said: "A lot of the prostate cancer patients we see are black men but we weren't seeing them in any of our existing support groups.

"When we started asking why, the feedback we got from our black patients was about the importance of being able to talk to patients from similar communities going though similar experiences."

You may also be more likely to get prostate cancer as a black man if you are aged 45 or over – with your risk increasing as you get older – and if your father or brother has had it.

Amelia Barber, prostate cancer clinical nurse specialist at Guy's and St Thomas', said: "It's not uncommon for a black man to be diagnosed with prostate cancer and not tell his family because the stigma is so great. But if you don't tell your son, who will be at increased risk of prostate cancer, then he can't start testing to catch it earlier.

"So a lot of the guys in the group are really keen on awareness raising and are very courageously starting to talk about this kind of stuff in their community centres, barbershops and with family members."

Brian Quavar, 59, from Docklands in east London was diagnosed with prostate cancer in July 2021 and joined the group after being told about it by Jonah. He said: "Men generally might be embarrassed to go to their doctor about this but it is even more of a taboo amongst black men. You will hear some say that what they don't know can't hurt them.

"There's also this notion that black men are supposed to be virile in terms of their sexuality. They feel it’s something they have to live up to and any interference with that area is going to affect their performance. So to be able to have a group of black men speaking honestly about the experience and how it’s affected them and the issues they face is enlightening.

"The group is somewhere black men can feel comfortable to share and talk openly about their experiences in a way that's respectful and supportive of each other. You find out what to expect because there are people at different stages of their recovery. I'm able to share my experience and be a support and inspiration to other men who are just beginning their journey."

The prostate is a small gland in the pelvis and is part of the male reproductive system. About the size of a walnut, it's located between the penis and the bladder, and surrounds the urethra (the tube that carries wee out of the body).

Brian, a father of four, is raising awareness of prostate cancer outside of the group as well. The London Underground train driver said: "Any time I speak with other black men I mention it. I say 'when was the last time you had a PSA test?' If they haven't had one I encourage them to get one.

"A lot of people still think the first or only test for prostate cancer is the digital rectal exam which a lot of men are reluctant to have. So I tell them the PSA test is just a blood test and the rectal examination will follow only if it's necessary."

The group was launched in September 2021 and has hosted talks from specialists about subjects including erectile function, sex and intimacy in the context of prostate cancer. It meets once a month and also welcomes partners, family members and carers.

The project is part of a wider national NHS England and NHS Improvement programme of work to improve patient experience.

You can check your risk with Prostate Cancer UK's online risk checker. If you are a black man over 45 it's recommended you speak to your GP about your risk of prostate cancer, even if you don't have any symptoms.