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The Forgotten 10,000

Getting it right for men with prostate cancer ..

Around 10,000 men die of prostate cancer each year in the UK. Yet, compared with many other common cancers, it does not attract a great deal of interest from policymakers—even in the past year, which has seen the launch of new treatments, and signs of further developments on the near horizon.

In view of the low profile for what is the most common male cancer in the UK, and the ongoing developments in prostate cancer research, an ExpertPanel of healthcare professionals and voluntary sector workers met to consider the services currently received by men with the condition. Our discussions highlighted many key issues for patients with prostate cancer, for their families, and for healthcare professionals and the voluntary sector.

The issues are set out in this document, along with the Expert Panel’s recommendations, in the form of Calls to Action for Prostate Cancer. We believe our Calls to Action could eventually form the core of a Bill of Rights—which we hope to see developed at a later date with the aim of ensuring that all men with prostate cancer—including “The Forgotten 10,000” who die each year from this poorly publicised condition—receive effective, well managed care.

<CLICK HERE TO DOWNLOAD FULL REPORT>

 

Here's what the press have to say about it....

http://www.telegraph.co.uk/health/healthnews/9044551/Prostate-cancers-forgotten-10000.html 

Mestizo Charity Fundraising Dinner!

Mestizo owner/manager, Marysol Alvarado, will be running the 2012 Virgin London Marathon, aiming to raise £2,000 for Prostate Cancer Research Centre. Support this noble cause whilst enjoying a fun & delicious Mexican night!

Friday 10^th February, 2012 — 8 pm

 

Welcome drink

Three-course dinner

Live Mariachi

 

Tickets £50 (available from the restaurant. Tel: 020 7387 4064 / eat@mestizomx.com)

Learn more about Marysol’s effort at uk.virginmoneygiving.com/MarysolAlvarado

 

Mestizo

103 Hampstead Road, London NW1 3EL

mestizomx.com

www.facebook.com/mestizolondon

www.twitter.com/mestizomx

 

Additionally, Mestizo will donate £1 from every Taco Tray we serve from now till the race!

INDEX (HIFU) Theraputic Trial - Willing Candidates Needed

INDEX is a multi-centre prospective single arm inter-vention trial evaluating focal therapy for localized pros-tate cancer. The trial will use High Intensity Focused Ul-trasound (HIFU).

INDEX aims to recruit and treat a total of 140 men with focal therapy and follow them for a period of 3 years.

 

 

 

INDEX Aims

Men who have localized prostate cancer can choose to have a number of treat-ments to treat the whole prostate, including radio-therapy and surgery. Active surveillance with selective delayed intervention can also be offered in many men with low-intermediate risk can-cer. Those men who have treatment to the whole prostate have greater cer-

tainty that all of the cancer is treated. However, treatment to the whole prostate can affect sexual function (poor erections), urine control (urine leakage requiring pads) and can cause back passage problems (bleeding, diarrhoea or pain).

An alternative approach that is being explored within tri-als is to treat only the can-

cer, and not the whole pros-tate - so-called ‘focal thera-py’. There are a number of treatment modalities that can be used to treat cancer in a focal manner. The one selected for this trial is HI-FU. MRI scans and template prostate mapping (TPM) biopsies will be used to lo-calise cancer and assess suc-cess after focal therapy.

For more information please see the INDEX Trial newsletter

Candidates for a prostate cancer screening clinical trial are needed.

UCL are looking for willing participants to take part in a new clinical trial testing prostate cancer screening methods.

The method being tested is PICTURE - Prostate Imaging (Multi-parametric MRI and Prostate HistoScanning™) Compared to Transperineal Ultrasound Guided Biopsy for Significant Prostate Cancer Risk Evaluation.

The number of men being diagnosed with prostate cancer is rising however the number of deaths from prostate cancer is stable. Meaning many men are being diagnosed with prostate cancer that will not impact on their life. The explanation for this rise in incidence is partly due to increased use of the PSA test (Prostate Specific Antigen blood test), as a screening method.

Currently men suspected of having prostate cancer, identified by a raised PSA, undergo trans-rectal ultrasound guided prostate biopsy (TRUS biopsy). Many men have this test unnecessarily, only 1/3 being diagnosed with prostate cancer. TRUS biopsy is problematic as it is random and performed ‘blind’ with the operator not knowing where the cancer is. Thus many low-risk cancers that do not need treating are diagnosed and many high risk cancers are missed or incorrectly classified. So, men with a negative biopsy or those with low risk disease are usually advised to undergo another TRUS biopsy.

We, at the Prostate Cancer Research Centre, believe an imaging test is needed that could help men and their doctors decide whether the biopsy is a true reflection of what is inside his prostate.

Researchers will test the role of two imaging tests. The first, multi-parametric magnetic resonance imaging (mp-MRI) uses magnetic signals from the body to form images. The second, Prostate HistoScanning™ (PHS) uses sound-waves.

The results of these tests will be compared with a detailed biopsy map-transperineal template prostate mapping biopsy (which is currently the best way to find out what is in the prostate but requires multiple biopsies to be taken under general anaesthetic.)

Our aim is to see if either of these tests can confidently rule out the presence of clinically important disease.

Eligible men for this clinical trial will have undergone one or more TRUS biopsies and who are seeking further investigation/re-assurance regarding their disease status. 

Below are the Inclusion/Exclusion criteria:

Inclusion Criteria:

• Men who have undergone prior trans-rectal biopsies.
• Men seeking further evaluation of their prostate and who are suitable for characterisation using Transperineal Template Prostate Mapping Biopsy.

Exclusion Criteria:

• Previous history of ANY prostate cancer treatment
• Men unable to have MRI scan, or in whom artefact would reduce quality of MRI.
• Men unable to have general or regional anaesthesia
• Men unable to give informed consent

It is a trial best suited to men on Active surveillance who wish to reassure themselves that any significant disease in their prostate is not being missed, any man who is considering focal therapy for their prostate cancer which requires a high degree of confidence regarding disease status. Also men who have had repeated negative TRUS biopsies in the face of a high PSA and wish to ensure that we are not missing any disease within their prostate.

We are just awaiting final registration on www.clinicaltrials.gov and final Research and development approval and hope to be running early in 2012. We would be happy for any man who wishes to be considered to contact me to discuss eligibility. If eligible they would require their GP to refer them to UCLH for us to arrange an appointment for them.  The details for referral would be:

Professor Mark Emberton, MBBS,MD,FRCS
Study Principal Investigator
University College London Hospitals

250 Euston Road
London 
NW1 2PG

Alternative Contact:  

Trial Co-ordinator  Miss Lucy AM Simmons, MBBS, MRCS    

Telephone:   0044 203 447 9194
Email:   lucy.simmons@uclh.nhs.uk

 

Two best mates take on the London Marathon for prostate cancer

In December last year Sam Kitcher’s father Lee was diagnosed with prostate cancer that unfortunately spread to the bone.  This was devastating news for the whole family and had a significant effect on Sam who is incredibly close to his father. 

Since his diagnosis Sam has accompanied Lee to all of his appointments and various treatments which he says has ‘exposed me to the severe effects and consequences of living with prostate cancer, so much so I pledge to make every man I know aware of the dangers of this disease, to look out for signs and to be regularly checked when over a certain age’.

The thought of being without his father affects Sam on a daily basis.  To combat this depression he decided to focus on raising money for research into an eventual cure.  Not wanting to do things by halves, he entered the ballot for next year’s Virgin London Marathon.

We were so moved by Sam’s story and impressed with his fundraising plans he shared with us that we offered him one of our golden bond places. 

Not long afterwards Adam, Sam’s best friend, contacted the charity.  He told us that Lee had always been there for him, a confidante with issues he daren’t tell his own parents, ‘larger than life, loud and funny but incredibly warm, a man who would do anything for you’.  Despite wanting to openly share the Kitcher family’s upset, as a best friend, he knew his duties were to be there for Sam and be strong for him.  Wanting to continue that support he too signed up to take on the marathon challenge alongside his best friend. 

So (of course, how could we say no) we gave Adam a golden bond place too so they will be able to support each other during their gruelling winter training programme and then take to the Greenwich start line together on the 22^nd April 2012. 

There has already been one golf day with raffle held raising over £1100!

To support Sam please go to http://www.justgiving.com/Sam-kitcher

To support Adam please go to www.justgiving.com/AdamKingshott

Father and son team tackle the Virgin London Marathon

Matt Woods is a professional singer/song writer, originally from Cornwall, living in London and is also, along with his father Peter, one of our 2012 Virgin London Marathon team.

While on holiday in Cornwall in August 1999 Matt’s maternal grandfather, Howell, became anxious about increased night time visits to the toilet and on his return went to see his GP.  On discovering an enlarged prostate his GP referred him to a consultant urologist for further tests. 

A biopsy confirming malignant prostate cancer was taken and Howell began a course of medication and received a Zolodex implant every three months.  He also underwent an operation to increase the flow of urine from the bladder.

Over the next six years Howell continued with life as normal, except for two further operations to try to increase the urine flow, his social life was unaffected and he continued to attend cricket and rugby matches as well as enjoying holidays with the family.

In early 2008 he started to experience pain in his right thigh and, on the instructions of his daughters, returned to his GP where a scan revealed cancer in his pelvic bone.  Radiotherapy treatment for this was successful and relieved the pain.  But it was the summer of 2009 that Howell's prostate problems began to seriously worsen.  His PSA (Prostate Specific Antigen) level showed a sudden rise so his medication was increased but this didn’t seem to make any difference and his PSA level continued to rise.  On the advice of an oncologist he began a course of chemotherapy but, as can be the case, became quite unwell.  Feeling exhausted and lacking energy, Howell struggled to climb more than two stairs and having lost his appetite completely lost a vast amount of weight.

Drinking (and enjoying) several pints of Guinness nightly and eating (but not enjoying!) Forticreme provided on subscription for nourishment was the only way to keep his calorie intake up.  The chemo had worked though and his PSA level had dropped from 100 – 15.  By January 2010 he began to reduce his intake of Guinness and introduce a variety of foods to his diet again..

Today Howell continues to see his oncologist and recently had more radiotherapy on his pelvis.  Other than having to use a stick, and the odd painkiller, life is pretty normal.  In fact Howell told us he is very much looking forward to a ’normal’ Christmas dinner  and sharing a few bottles of ‘bubbly’ with his family!

Matt has been planning a charity gig to be held at The Retreat in Essex on Saturday 26^th November.  Entry is free with donations for the charity being collected on the night. 

For more information www.myspace.com/themattwoods

To support Matt & Peter in their marathon challengeto sponsor them.

I know everyone says that their dad is the best man ever but I KNOW that mine is!

Claire Flack is one of our Virgin London Marathon runners and she is taking on this mammoth challenge for her ‘Popsicle’ who has incurable prostate cancer.

In October 2009 her father was admitted to hospital suffering from the most unbearable back pain, after a series of tests he was given the devastating diagnosis.

Claire remembers her mother breaking the news to her and feeling like her world had ended.  Now she is staying strong for her family and focusing all her energies in raising money for the research we are undertaking her at the Prostate Cancer Research Centre.

With the support of her employers, Healthcare Locums PLC, where Claire is a Payroll Supervisor, she plans on organising a dress down day EVERY Friday and putting the donated funds towards her £2000 target.  The directors have also agreed to match whatever is raised through the dress down day.

Claire has already distributed collection boxes and will be contacting local shops asking for donations to a raffle she will hold as well as pieces she can sell at car boot sales.

To support Claire go to www.justgiving.com/claire-flack

 

'Girls, I've got cancer' - Why Sarah Lees is running for us...

Sarah Lees is one of our Virgin 2012 London Marathon runners.  Her father was diagnosed with Prostate cancer in early 2005.  Initially he decided to keep it from his daughters whilst they went through important stages of schooling but that summer when they found out Sarah said she ‘felt physically sick and to hear the words “Girls I’ve got cancer” made me think he was going to die’

Luckily for Sarah’s father, Philip, he had keyhole surgery – the first of its kind at the hospital where he was treated– and has been clear for the past few years.  Here is Philip’s story: 

At the age of 9 years old I remember one evening being taken to see my father who was 45 years old lying in bed having great difficulty in breathing. He had undergone two major operations for cancer reducing him from 18 stone to less than 6 stone. On this particular evening my mother said to say goodbye to Dad. Next morning when I woke up he had died. The thought of Cancer has
lived with me for my entire life as I saw the misery and upset it can cause to a family. Choosing to retire early and children going off to university was all planned until I had a routine blood test
which indicated I had prostate cancer. Further tests confirmed this. Regardless of how many people said "Don’t worry it will be fine" my mind and thoughts always went back to my childhood.
 
The difficult decision was how doI tell my three daughters, doing this was really hard, but once done I felt relieved that I could talk about my problem openly. I was fortunate that I had so many options offered to me for the methods of treatment which was so confusing at first but eventually I decided to have keyhole surgery. My operation was at the North Staffordshire Hospital. I was the first patient at this hospital to have this key hole surgery operation. The surgeon could have been my son he was so young but reassured me that his boss from Birmingham was going to oversee the operation. Four days later I was discharged and spent several weeks recovering. Several years on I have my annual blood test and lead a very normal active life.
 
The research and development which has taken place since my childhood is remarkable. When Sarah, my daughter, said she was going to run the London Marathon I thought she could not walk 26 miles let alone run it! The effort and determination she is putting into her training makes me very proud especially as she is doing this to raise money in aid of PCRC. With the research and dedication given by so many people, we may one day overcome the problems of Prostate cancer. Sarah has a lot of plans to achieve her target - she has asked her hockey team to don PCRC t-shirts and give up an hour or two of their time to go out and collect money from unsuspecting members of the London public, she has written to all her friends and family asking them to sponsor her or make a donation, she is planning an event at her place of work with an own clothes day and is organising a colleague sweepstake. A car boot sale, 'Blue Day' in her vintage business she runs with her sister and local business advertising/sponsorship deals to name a few will surely make this whole process a huge success.

I will certainly be at the finishing post on April 22nd cheering everyone on and if you are asked to sponsor a runner then please, please do so as the saying goes 'Every Little Helps!'.

Sarah told us it was tough while her father was ill but he never complained once nor got angry or frustrated.  It was his bravery during this very difficult time that made Sarah determined to do something for all of those who helped her and her family and to raise money for a charity researching an eventual cure for prostate cancer.

Sarah said “Prostate cancer needs to be highlighted and needs funding so that people like my father can get the help, support and treatment they need.  Without charities like yours I wouldn’t have my father still with me today.”

To support Sarah and her marathon run please <clickhere>

Sarah and her sister also have a vintage shop in Sheffield they are planning to hold a ‘Blue Day’ at to raise more funds www.sarahsvintagewendyhouse.com

"Too painful to cuddle, was like I'd lost my favourite teddy bear"

Kirsty Adlem is one of our runners for the 2012 Virgin London Marathon and this is her story:

It was Christmas 2006 when my Dad became ill, so, as well as preparing for Christmas, Mum and Dad were also running back and forth to the hospital. My brothers and I were aware something was going on, as Dad had not been feeling great for a couple of months but we didn’t realise that Dad had prostate cancer. At first I was calm and we all comforted each other, giving each other hugs. We were all aware that we were going to be in for a tough time, but at that point the reality hadn’t hit me. A couple of days later, though, it hit me like a lead balloon.  All I could think was, “Oh no, my Dad has cancer”. I was not thinking of him, just myself and how it was going to affect my life and the pain I was going to go through. This was man who had always been there for me and had supported me. The man I respected and who had given me so much advice. Suddenly, I had to be the strong one, not only for him but also my mum, brothers and our friends, but all I wanted to do was hide.  

After about a week of being in denial, Dad and I chatted and, in his lovely wisdom, he said, “It’s a lot harder for you, darling, than me. I can accept the situation as it’s happening to me and I can feel it inside.” To me that was the best thing he could have said, I felt he understood what I was feeling.  

The first year was tough; hoping the various different tablets and treatments would work and prevent my Dad from having chemotherapy. My Dad was a strong man, which made it easier, but for me as a 23 year old graduate looking for a job, having a Dad suffering influenced my decision about where I wanted to work, so I took a job in London and commuted daily.  Six months in we learned that Dad needed chemotherapy. This meant every three to four weeks; he would be feeling tired and drained. It was hard going to work on those days, knowing that my Dad would be feeling rubbish when I got back.

Living with it on a daily basis was tough on Mum and I, knowing Dad was finding it difficult to sleep at night due to the pain, his appetite was slowly decreasing and he was worrying about the future of his family. I use to get angry at my brothers sometimes, as I felt they did not understand what Dad was going through. I suppose it was easier for Mum and I as we lived and faced it on a daily basis. They had more of a shock when they popped round a couple of times a week.

One of the most painful times was when I went to give my lovely Dad a cuddle and it was too painful for him. It felt like someone had taken away my favourite teddy bear and I was never going to get it back. It must have been worse for him as he knew in his heart that the one thing that could provide so much comfort he couldn’t give.

Even though unfortunately my Dad passed away, I am, in a strange way, glad of experience, as I share my story with other daughters of this world and to tell all your female friends the importance of spreading the word of getting the men in our lives tested for prostate cancer and encourage research into this dreadful disease.

To support Kirsty <clickhere>

Q and A about Prostate HistoScanning by Miss Lucy Simmons

Lucy qualified in Medicine from Newcastle University. She is currently a clinical research fellow at University College London & University College London Hospitals Trust where she is undertaking a postgraduate medical research degree under the supervision of Professor Mark Emberton and his team. Her research focuses on a novel imaging technology for prostate cancer detection- Prostate HistoScanning™.

In May Lucy took part in the BUPA London 10km race, raising £1275 for the Prostate Cancer Research Centre.

What is Prostate HistoScanning™?

Prostate HistoScanning™, is a new 3D ultrasound imaging technology that utilises the raw data usually obtained but not show, during prostate ultrasound. It aims to  distinguish the tissue characterisation signals that are normal from those that may be indicative of prostate cancer. Consequently Prostate HistoScanning gives a prediction in the form of a picture of the presence or absence and location of prostate cancer within the prostate.

Why do we need Prostate HistoScanning™?

Prostate cancer is a major health issue facing the men in our lives. It is the most common cancer in the UK accounting for nearly a quarter of all new male cancers. Yet it remains one of the only solid organ cancers where there is no established imaging test widely available to aid diagnosis.

In the UK the standard practice for investigating prostate cancer includes a digital rectal examination (DRE) of the prostate by your doctor to feel for any abnormal lumps on the prostate and a blood test called Prostate Specific Antigen (PSA) which, if raised, may help the doctor work out if a man is at risk for prostate cancer. When one or both of these tests are suspicious for prostate cancer, men are normally referred to a urology doctor for biopsies of the prostate and diagnosis.

Biopsies of the prostate are taken using an ultrasound probe that is placed in the back passage and used to guide needles into the prostate. In most places around the UK this procedure is still performed in an untargeted manner  i.e. the doctor will take a number of biopsies from predetermined areas in the prostate- usually 8 to 12 samples depending the size of the prostate. The biopsy process is an unavoidably invasive test with most men experiencing bleeding after the procedure either in the waterworks or from the back passage. Also, due to the needles passing through the back passage into the prostate, the biopsy test carries a 4% risk of infection. Because of the untargeted technique used, some significant cancers can be missed by chance, or because they are in an area not commonly sampled. Also, as many men develop small harmless prostate cancers as they age, these can be detected on biopsy.  Uncertainty over whether this might be part of a larger cancer means that some men will have these cancers treated unnecessarily. 

 In other cancers, such as breast cancer, it is common to perform a targeted biopsy, where women with a normal imaging test (mammogram) do not have a biopsy, and those with an abnormal imaging test have only that abnormal area sampled with a biopsy. 

Many doctors think that there is a need for a widely available imaging technique, such as Prostate HistoScanning™, to have a similar role in the diagnosis of prostate cancer.

 What does a Prostate HistoScanning™ test involve?

A Prostate HistoScanning™ test is very similar to a standard transrectal ultrasound of the prostate. Men are asked to empty their bladder and bowel prior to the procedure. They are requested to lie on their left hand side and an ultrasound probe is inserted into the back passage. With the aid of a hand held motor, the probe is rotated slowly through 180 degrees to capture a full set of 3 dimensional data of the prostate gland.

This data is then analysed by the Prostate HistoScanning™ software. When areas suspected to be cancer are detected, these are mapped as red areas on the ultrasound image, with the prostate boundary outlined in yellow, as seen in this picture which shows a transverse slice through the prostate. 

How good is HistoScanning™ at detecting prostate cancer?

There are now more than 30 Prostate HistoScanning™ centres across Europe and the clinical evidence in support of the technology is increasing.  The latest results indicate that Prostate HistoScanning™ shows potential to accurately detect and localise cancerous lesions within the prostate.

However this technique still requires further verification and clinical trials are currently underway to investigate the potential role of Prostate HistoScanning™ for prostate cancer detection. Many imaging tests are undergoing evaluation for their usefulness in prostate cancer diagnosis- Prostate HistoScanning™ is just one of the possible modalities.

Should anyone be interested in this new technique or other clinical trials for the diagnosis of Prostate Cancer please ask your doctor to refer you to -

Professor Mark Emberton

Department of Urology

University College London Hospitals Trust

250 Euston Road

NW1 2PG.