CLASSIFIED MARCH 28 - APRIL 3, 2013 THE VOICE | 21

WelcomeMany of us will know the impact that cancer has on lives: we may also know that cancer affects 1 in 3 people in the UK. But do we really know the impact that this disease is having on the black British population? In the UK at least 1 in 10 people describe themselves as being from a black or other minority ethnic community (BME). So why does all this matter? And what has it got to do with YOU? It matters because, we in the black community are less likely to access cancer screening services, (breast screening, cervical screening, and bowel screening). We are also less likely to know what the early signs of cancer are, and are more likely to delay getting things checked out. It matters because our black men have 3 times the incidence rate of prostate cancer than white men, and the chances of getting prostate cancer increase when there are other members of the family who have had prostate cancer.

No one in 2013 should die because of ignorance, and no one should feel ashamed if they get cancer and need the NHS. After all, many of our grandparents helped to build the NHS during the Windrush period. So we should be making use of it, and making it work for all of us.

Inside this issue of the health supplement, you will fi nd some key facts about the early signs of cancer, and see what some organisations are doing to support black people with cancer. You will also hear from some of the national BME cancer voice members, and champions of change, who share with you their touching stories and life journeys.

I hope you fi nd it helpful. Please do share it with others because after all ‘knowledge is power’.

Paula Lloyd KnightAssociate Director, Patient ExperienceNCAT NHS

Cancer andthe blackcommunity

Health I S S U E 5

Cancer is a disease of cells. Our bodies contain about a hundred million million human cells of over 200 different types. They join together to form tissues, which in turn form organs – like the lungs and skin. Each cell-type has its own characteristics, so it can do its job.

Most cells are dividing all the time to replace cells that have died. This process is controlled by the cell’s DNA, which is like an instruction book which tells the cell what to do and when to divide. But in cancer cells, that control is lost. The DNA is damaged and the cell just keeps on dividing. The result is a growing mass of cells where they’re not wanted –sometimes forming a tumour.

DNA can get damaged in many different ways. People can be born with damaged DNA and things in our environment like chemicals in tobacco, some infections and too much UV light can damage DNA.

Before a cancer will develop lots of changes to a cell’s DNA need to build up over time. This is why cancer is more common among older people.

Cancer develops because tiny amounts of damage to the DNA in our cells build up over our lifetimes.

What is Cancer?We all know the word cancer, but how many of us know exactly what is happening in our body when cancer develops and what can cause it?

Bristol Black CarersBristol Black Carers is a local charity set up in 1997, to provide a unique and culturally supportive service mainly to black and minority ethnic (BME) young and adult carers and their families in Bristol.

Their aim is to help reduce the isolation felt by many carers, improve their quality of life, build trust between service providers, provide practical help and support, promote the benefi ts of a healthy lifestyle and empower carers to have a voice at policy development level.

They provide free and confi dential information, advice and support services for carers which include a monthly support group meeting, young carers youth club, trips and activities and a sitting and befriending service. For a full list of services and activities please visit their website www.bristolblackcarers.org.uk

IN THIS EDITION:STOMACH CANCER 2MYELOMA 2PROSTATE CANCER 3LIVER CANCER 4WHERE TO FIND OUT MORE 4

Information provided by Cancer Research UK

S U P P L E M E N TP R E S E N T E D B Y N A T I O N A L C A N C E R A C T I O N T E A M

Pictured above are eight of our very own BME Cancer Voice members

For further information, please contact Hazel Brittan, Adult Care Service Manager at Bristol Black Carers on (0117) 314 4664/67 or you can email hazel@bristolblackcarers.org.uk

Please visit

www.blackcancervoice.co.uk

We always want to hear what you think about the publication so please email us your thoughts atpaula.lloyd-knight@ncat.nhs.uk

Issues 1-4 can be viewed at www.BMEcancervoice.co.uk

Follow

@BMECancerVoice on Twitter

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NHS National Cancer Action Team accepts no liability for the views and opinions of organisations or individuals in this supplement.

WHAT TO LOOK OUT FORThe symptoms of stomach cancer can be quite vague. Early symptoms can include:

• Indigestion

• Burping

• Feeling fuller than usual after meals

• Feeling tired or breathless

• Pain

• Feeling or being sick

• Diffi culty in swallowing

All of these symptoms can be caused by things that aren’t cancer, but if you do notice any of these and they hang around for a few weeks, get them checked out by your doctor.

WHAT TO LOOK OUT FORSymptoms of myeloma include:

• Bone pain

• Fatigue

• Repeat infection

• Bone fractures

• Kidney problems

Stomach cancer is the 13th most common cancer in the UK. There were around 7,500 cases of the disease diagnosed in the UK in 2009 – that’s around 20 every day. As with most cancers, it’s more common in older people: 95 in 100 cases of stomach cancer are diagnosed in people aged 50 and over. Stomach cancer is more common in men, in black people than in white or Asian people and in socially and economically deprived groups of people.

But the good news is that stomach cancer incidence rates in Britain have more than halved since the late 1980s. This is thought to be largely due to improved sanitation and living conditions reducing infections with the bacterium Helicobacter pylori, one of the main causes of stomach cancer. Research by Cancer Research UK scientists has shown that around 75 per cent of stomach cancer cases are attributable to this bacterium and other lifestyle factors, including smoking, having a diet low in fruit and vegetables or high in salt.

There are several different types of stomach cancer. The most common type (95 per cent of all stomach cancers) is adenocarcinoma, which affects the cells that produce mucus and juices in the stomach. Over the last 40 years, fi ve-year survival rates for stomach cancer have tripled, but they are sadly still low – fewer than one in fi ve people survive the disease for fi ve years or more.

If you haven’t heard about myeloma, then you are not alone. In a recent survey only 3% of people knew what it was.

Myeloma is a cancer arising from the plasma cells in bone marrow. Plasma cells are responsible for protecting the body against infection.

It is the second most common type of blood cancer and approximately 4,000 new cases are diagnosed in the UK each year.

Myeloma is slightly more common in men than in women and slightly higher in African-Caribbean people compared to White people. The number of cases of myeloma has more than doubled in the last 30 years.

It mostly occurs in people over 60, but can affect people much younger. The usual symptoms of myeloma are easily confused with common aches and pains which mean GPs can fi nd it hard to suspect cancer.

Currently there is no cure for myeloma, but overall survival of patients has improved faster than any other cancer in the UK in the last 10 years due to new drug treatments and research. One of the remaining barriers to further improving survival in myeloma is late diagnosis.

Typically diagnosis takes three to four GP visits over six to 12 months. Many patients are only diagnosed after a bone fracture or kidney failure.

Early diagnosis means longer survival and better quality of life, so, the charity Myeloma UK is providing GPs with a tool that helps rule out routine aches and pains and assists in spotting suspected cases earlier.

Contact Myeloma UK to receive your copy of the diagnosis tool for GPs and help spread awareness of myeloma - call 0131 557 3332 or visit www.myeloma.org.uk

Myeloma UK provide the Myeloma Infoline; a quality accredited, freephone service providing information, emotional support, practical advice and a listening ear for anyone affected by myeloma. Calls have no time limit, are confi dential and can be anonymous. In the UK call 0800 980 3332.

Stomach Cancer

Myeloma:

Information provided by Myeloma UK

Information provided by Cancer Research UK

AWARENESS

Sophia’s StoryMy brother Basil Skyers was diagnosed with multiple myeloma in November 2008. It is a condition that affects African Caribbean people more often than white people, but we had

never even heard of it before diagnosis.

Over a period of three months my brother went to his GP and was treated for infections and other conditions. However, his symptoms worsened. We spoke about it and after some persistence he was given a blood test. That evening, my brother was admitted to hospital with renal (kidney) failure, a common complication of multiple myeloma. The blood test revealed that my brother did have the condition, which is a form of cancer.

GPs have guidelines in place which mean they must make a referral to secondary care within two weeks, where cancer is suspected. In my brother’s case he was treated for various conditions but it took a lot of prompting on our part to get the right diagnosis. As his carer I took the issue up formally with his GP Practice and the PCT. They met with me to listen to my concerns. As a result, systems were set up to immediately raise an alert if a patient presents with persistent symptoms within that practice over a period of time.

Following his diagnosis with multiple myeloma, Basil undertook a course of chemotherapy and a stem cell transplant. The renal team worked with my brother and he regained his kidney function. With the myeloma under control, Basil was able to get on with life. This was an important time for him and for us as a family.

Eventually, my brother’s Myeloma could no longer be controlled and after a short hospital stay, he came home on a Friday, late afternoon. At the time of discharge, I was told that it was impossible for me to get support locally as it was a weekend. The experience was a hard one as I had no idea what to expect. I had no idea what the signs were when someone is approaching the end of their life. My brother died in the early hours that Monday morning.

The Basil Skyers Myeloma Foundation was set up in 2010 with the help of consultants and myeloma nurse specialists at the Nottingham Centre for Clinical Haematology, City Hospital, and consultants at the Royal Marsden, the Christie Hospital, patient representatives and friends and family. The Foundation provides practical and fi nancial support for myeloma patients, carers and their families. For more information visit www.basilskyersfoundation.org

Dr Sophia SkyersChair of the Basil Skyers Myeloma Foundation

The challenge and importance of early diagnosis

My cancer journey

Joe*, like many men, was reluctant to visit the doctor, even

when he was unwell. It wasn’t until his wife noticed that his skin colour was

getting darker and darker that he was pushed into making an appointment with his GP. Joe also had constant itching which he explained to the GP at his appointment.

The doctor sent Joe for several blood tests, but Joe wasn’t sure what they were looking for. Eventually Joe had had enough, so he said to the doctor that he didn’t want any more blood tests until someone explained to him what the problem was. ‘The GP didn’t give me the blood test’ said Joe ‘he picked up the phone instead and rang the hospital’. The hospital rang Joe the very next day and

he was asked if he was available to have an endoscopy.

After the endoscopy Joe was told that he had an ulcer, however, more tests would be required.

A little while later he received a letter from the hospital confi rming he had

stomach cancer.

Joe had his operation and the consultant explained that they had removed half of his stomach and, as a result, he would only be able to eat less than he could hold in one hand. Over the next few months, this left Joe lacking energy and feeling weak. But his faith gave him strength. ‘One day the Lord told me my work isn’t fi nish and that I needed to be strong. I said God, I need to be strong, make me strong.’

A nurse came from the hospital to administer care and his faith helped to carry him through. The church was a great support, as was the loving care his wife gave to him.

However, he wishes the GP had communicated better with him; explained why he was being sent for blood tests in the fi rst place and referred him to the hospital sooner. Joe feels if he hadn’t had the confi dence to persist, he may not have got the treatment he needed in time.

*Joe is not his real name. Joe is a Champion for Change, and gave his story to us anonymously. You can fi nd out more about the Champions of Change programme on page 3.

bacterium and other lifestyle factors, including smoking, having a diet low in fruit and vegetables or high in salt.

There are several different types of stomach cancer. The most common type (95 per cent of all stomach cancers) is adenocarcinoma, which affects the cells that produce mucus and juices in the stomach. Over the last

cancer have tripled, but they are sadly still low – fewer than one in fi ve people survive the disease for fi ve years

Information provided by Cancer Research UK

into making an appointment with his GP. Joe also had constant itching which he explained to the GP at his appointment.

The doctor sent Joe for several blood tests, but Joe wasn’t sure what they were looking for. Eventually Joe had had enough, so he said to the doctor that he didn’t want any more blood tests until someone explained to him what the problem was. ‘The GP didn’t give me the blood test’ said Joe ‘he picked up the phone instead and rang the hospital’. The hospital rang Joe the very next day and

he was asked if he was available to have an endoscopy.

After the endoscopy Joe was told that he had an ulcer, however, more tests would be required.

A little while later he received a letter from the hospital confi rming he had

stomach cancer.

Joe had his operation and the consultant explained that they had removed half of his stomach and, as a result, he would only be able to eat less than he could hold in one hand. Over the next few months, this left Joe lacking energy and feeling weak. But his faith gave him strength. ‘One day the Lord told me my work isn’t fi nish and that I needed to be strong. I said God, I need to be strong, make

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CLASSIFIED MARCH 28 - APRIL 3, 2013 THE VOICE | 23

All men over 50 are entitled to a PSA test on the NHS provided they have made an informed choice following discussion with their GP about the pros and cons of having the test” The Department of Health

Prostate cancer is the most common cancer in men, with over 40,000 new cases diagnosed every year in the UK”

Dr. Frank Chinegwundoh Lead Urology Consultant at Newham University Hospital

common cancer in men, with over 40,000 new cases diagnosed every year in the UK”

Consultant at Newham

NHS National Cancer Action Team accepts no liability for the views and opinions of organisations or individuals in this supplement.

WHAT TO LOOK OUT FOR What changes should I look out for? Some men with prostate cancer may have no symptoms at all, but if you have any problems with you waterworks, it might be a sign of a prostate problem.

Some symptoms caused by prostate problems include:

• Needing to pee more often, especially at night

• Diffi culty starting to pee

• Straining or taking a long time to fi nish peeing

My storyI* know that I have a family history of prostate cancer. My grandfather, father and uncles all died from prostate cancer. So even though I did not have any symptoms, because of this history, it was on my mind.

In June 2009, I had a check-up and my PSA test results were high. Within fi ve days of the results, I was sent to see a consultant. In July 2009, I had my biopsy. The results came back positive for prostate cancer. This was followed by another session with my consultant, who went through all the treatments on offer. Because of my family history, I was advised the best option for me was Total Prostatectomy. After speaking with the nurse, hearing the advice from the consultant and conducting my own research, I chose surgery, which to me was my best chance of living.

Throughout all the stages of my treatment, my consultant was very understanding and I found him easy to talk with. I cannot express how relieved I was that the whole process was so quick. From diagnosis in July to the operation in October it was all over. The speed at which it all happened helped me to really focus and cope with the diagnosis. I felt

Checking the plumbingDid you know that in the UK, Black African and African Caribbean men are three times more likely to develop prostate cancer than white men of the same age?

The reasons why Black African and African Caribbean men have a higher risk of prostate cancer are not yet clear but it may be due to genetic changes passed through generations. With help from Prostate Cancer UK we highlight some of the important facts that you need to know.

What is the prostate gland?Only men have a prostate gland. It lies underneath the bladder and surrounds the tube that men pass urine and semen through (urethra). The prostate gland’s main job is to make some of the fl uid that carries sperm, called semen.

Generally prostate cancer is diagnosed in men over the age of 50 and your risk increases as you get older.

You are 2.5 times more likely to develop prostate cancer if your father or brother has been diagnosed with it, compared to a man who has no relatives with prostate cancer.

No one knows how to prevent prostate cancer yet and there does not seem to be a direct link between a Black African or an African Caribbean diet and prostate cancer. But in general, having a healthy diet and lifestyle may be important in protecting against the disease and other health problems.

that everything ran smoothly and quickly.

I had the same consultant throughout. Having him as my surgeon through this ordeal made a real difference to me. I felt listened to. I didn’t have to worry about repeating myself to new consultants. We had built up a trusting relationship and he was sympathetic and understanding.

One of the heaviest weights to carry was keeping everything to myself. I didn’t want to upset my family. My nurse did tell me about support groups but I didn’t go, as I didn’t know what to expect. But looking back, I really did need someone to talk to, especially another man who had been through it.

If a Black Men’s Cancer Support Group existed in 2009, I would have been more likely to go. Knowing there were other men from the same social and ethnic background would have made it easier for me to attend.

*The story is a real patient story but was submitted to us anonymously by a Champion of Change. Read more about the Champions of Change programme below.

It is the most common

cancer in men in the

UK

AWARENESS

• A weak fl ow of pee

• A feeling that your bladder has not emptied properly

• Needing to rush to the toilet – you may occasionally leak pee before you get there

• Dribbling pee

Problems with peeing are common in older men but this does not mean men should have to put up with them. There are treatments available for urinary symptoms as well as prostate problems and prostate cancer.

Information provided by Prostate Cancer UK

You will have read several stories in this edition and some of these stories have been provided to us anonymously by Champions of Change members. Here we talk a little more about what it means to be a Champion of Change.

‘Champions of Change: Cancer Services’ is a Nottingham-based service, aiming to improve NHS cancer services in Nottingham City, particularly for black and minority ethnic (BME) patients. It is brought to you by Bright Ideas Nottingham and BME Cancer Communities. It has been commissioned by the National Cancer Action Team (NCAT), as part of its ‘Cancer does not discriminate’ campaign, which aims to raise awareness of the early signs and symptoms of cancer among people from BME communities.

A network of ‘Champions’, local people from visible and non-visible BME groups, have been recruited. Champions volunteer their time to

Who are Champions of Change and what do they do?

provide their views and opinions on cancer services in Nottingham, as well as feeding into a national group called ‘BME Cancer Voice’. There are two types of Champion; Network Champions - people from BME groups with recent experience of using cancer services or being a carer for someone using cancer services, and Community Troupe Champions - people interested in cancer and carer issues who want to support others to put forward their views and promote the service within their community.

If you’re interested in becoming a Champion of Change, register with the Champions of Change facilitator, Lisa Jackson; lisaj@brightideasnottingham.co.uk, 07989 302571 or visit www.cancerchampions.wordpress.com

Am I at risk? Only men can get prostate cancer, but we know that Black African and African Caribbean men are three times more likely to develop the disease than their white counterparts.

Age

Family

Diet

What can go wrong?The three main types of prostate problems are:

• An enlarged prostate. This is the most common prostate problem and can be referred to as benign prostatic hyperplasia (BPH) or enlargement (BPE)

• Prostatitis - An infl ammation or infection in the prostate

• Prostate cancerTo fi nd out more about support groups for Black and Minority Ethnic communities, please visit www.BMEcancervoice.co.uk

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CLASSIFIED| THE VOICE MARCH 28 - APRIL 3, 2013 24

Where to fi nd out more ...

Contributors

Anthony Nolan 0303 303 0303 www.anthonynolan.org

The Basil Skyers Myeloma Foundation www.basilskyersfoundation.org

Beating Bowel Cancer08450 719 301 www.beatingbowelcancer.org

Bowel Cancer UK0800 8 40 35 40 www.bowelcanceruk.org.uk

Brain Tumour UK 0845 4500 386 www.braintumouruk.org.uk

Breast Cancer Care0808 800 6000www.breastcancercare.org.uk

Breakthrough Breast Cancer08080 100 200www.breakthrough.org.uk

Cancer Research UK0808 800 40 40www.cancerresearchuk.org

CLIC Sargent (for children with cancer) 0300 330 0803www.clicsargent.org.uk

Jo’s Cervical Cancer Trust0808 802 8000www.jostrust.org.uk

Look Good...Feel Better UK 01372 747500 www.lgfb.co.uk

Macmillan Cancer Support0808 808 0000www.macmillan.org.uk

Maggie’s Cancer Caring Centres0300 123 1801www.maggiescentres.org

Marie Curie Cancer Care0800 716 146www.mariecurie.org.uk

Mouth Cancer Foundation01924 950 950www.mouthcancerfoundation.org

Myeloma UK0800 980 3332www.myeloma.org.uk

National Cancer Action Teamwww.ncat.nhs.ukwww.cancerinfo.nhs.uk

Net Patient Foundation 0800 434 6476www.netpatientfoundation.org

NHS Cancer Screening Programmeswww.cancerscreening.nhs.uk

NHS Choiceswww.nhs.uk

Ovarian Cancer Action 0300 456 4700www.ovarian.org.uk

Ovacome – Ovarian Cancer Support0845 371 0554www.ovacome.org.uk

Prostate Cancer UK0800 074 8383 www.prostatecanceruk.org

Pancreatic Cancer UK0203 177 1686 www.pancreaticcancer.org.uk

Rarer Cancers Foundation0800 434 6476www.rarercancers.org.uk

Roy Castle Lung Cancer Foundation0800 358 7200www.roycastle.org

Sarcoma UK020 7250 8271www.sarcoma.org.uk

Teenage Cancer Trust 020 7612 0370www.teenagecancertrust.org

EditorsPaula Lloyd Knight, NCAT Suzi Chung, NCATClaire Elshaw, NCAT

Design D237.com

Production coordinator Suzi Chung, NCAT

Production Credits

HELP AND CONTRIBUTORS

NHS National Cancer Action Team accepts no liability for the views and opinions of organisations or individuals in this supplement.

Information provided by Cancer Research UK

WHAT TO LOOK OUT FOR Liver cancer has a number of possible symptoms which can be quite vague. Symptoms can include;

• Unexplained loss of weight

• A swollen tummy

• Low appetite

• Being sick

• Feeling more full than usual after eating

• Itching or yellowish skin

While these symptoms can all be caused by things other than cancer, it’s worth seeing your doctor if they’re still there after a few weeks.

There were around 3,960 people diagnosed with primary liver cancer in the UK in 2009, making it the 18th most common cancer in the UK. It is more common in men than women – almost two-thirds of cases are in men. Almost nine out of 10 cases are in people aged over 55. Risk of liver cancer is also higher in Black and Asian ethnic groups.

Research by Cancer Research UK has shown that around 40 per cent of liver cancers are linked to lifestyle factors such as tobacco, alcohol and infection with the hepatitis B or C virus. Liver cancer is often diagnosed at a late stage and so survival rates are low – around fi ve per cent of patients survive for fi ve years or more after diagnosis. So it’s important to be aware of the signs and symptoms and to see your GP if

you notice any unusual or persistent changes to your body.

Love your liver

Looking after MumIn April 2009, Sarah’s* Mother became bloated and constipated. Her stomach was big and she was in a lot of pain, so she was taken to hospital.

Blood tests and various investigations revealed that her liver was swelling with fl uid. The fl uid was drained and she was prescribed medication.

Sarah was informed that her mother may need a liver transplant. She also underwent blood tests, scan and x-rays.

Two months later she was informed that they wouldn’t be able to do the liver transplant because her mother had cancer.

Understanding how unwell her mother was, Sarah decided to quit her job to care for her mother full time. ‘So that I could care for my mother, I had to leave work, leave my home, leave my husband to fend for himself, thankfully he was very understanding. I stayed in the hospital with my mother for two whole months.

When my mother found out that she didn’t have much time, she just gave up and on the 14th of August she passed away.’

Her mother had received visits at hospital from leaders of her church, who offered spiritual comfort; they couldn’t offer any practical support. Sarah would like to see religious

leaders more informed and in tune with the medical staff, as they are trusted and well placed to offer advice and help in times of need.

Sarah also needed fi nancial support. It would have helped her to know whether she was entitled to claim benefi ts while caring for her mother. For instance, she was not made aware that she could park for free.

Sarah cannot understand why her mother’s cancer was not detected sooner. As a result of her mother’s death and hearing the health promotional messages in the media, Sarah told her GP about her family history of cancer, hoping that she will never have to go though the same ordeal.

* Sarah is not her real name. Sarah is a Champion for Change, and gave her story to us anonymously. You can fi nd out more about the Champions of Change programme on page 3.

Organisations working specifi cally for the black and ethnic minority community

African Caribbean Leukaemia Trust (ACLT) 020 8240 4480 www.aclt.org

The Afi ya Trust020 7803 1180www.afi ya-trust.org

Betterdays www.betterdays.uk.com

Black Health Initiative 0113 307 0300 www.blackhealthinitiative.org

BME Cancer Communities0115 934 8482 www.bmecancer.com

Bristol Black Carers0117 314 4664 www.bristolblackcarers.org.uk

Cancer Black Care 020 8961 4151 www.cancerblackcare.org.uk

Cancer Equality020 7735 7888www.cancerequality.org.uk

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the signs and symptoms and to see your GP if you notice any unusual or persistent changes to your body.

Black African men and women are around two to three times more

likely to be diagnosed with liver cancer than White groups. While the risk of

being diagnosed with liver cancer in Black Caribbean men and women is also higher, it is more similar to White groups. Survival from

liver cancer is similar in Black Caribbean, Black African and White men and women”

Dr Ruth Jack Epidemiologist/ Research Associate, Thames Cancer

Registry

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