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We have breast cancer units – so why not prostate cancer units?

Simon Crompton

Simon Crompton

There are few certainties in prostate cancer: intense debate continues to surround the benefits and drawbacks of screening, the relative merits of surgery, brachytherapy and radiotherapy and surgery, the right times for active surveillance and radical therapies. But through all the dialogue, a plain fact is now being acknowledged that casts a light on all aspects of diagnosis, treatment and continuing support. The patient’s own preferences, personality and circumstances have a central bearing on what the “right” decisions actually are.

Thanks to the efforts of patient organisations such as Europa Donna, this principle has already received widespread recognition in the most common cancer in women, breast cancer. A new European Parliament policy in 2003 prompted the growth of specialist breast units based around patient-centred multidisciplinary care teams. This, it has become clear, is the best way to take account of a wide range of individual needs and preferences.

The most common cancer in men, prostate cancer, is not yet widely benefitting from such a re-alignment. But that may change.

ESO promotes the specialist model

The specialist unit model is particularly well suited to prostate cancer and its convoluted decision-making. Not only does it provide specialist care and support at every stage – whether it be active surveillance, surgery and radiotherapy side effects or palliative care. It can also help patients recognise emotional needs that might not otherwise be addressed – and studies show that men are less likely than women to recognise the need for help.

These are all points that have been made with some force by the European School of Oncology’s Prostate Cancer Programme, led by Riccardo Valdagni, Scientific Director of the Division of Radiotherapy 1 and the Prostate Cancer Programme at the Fondazione IRCCS Istituto Nazionale dei Tumori, Milan. The programme developed the concept of prostate cancer units (PCUs), and in an influential article in the European Journal of Cancer in 2011 set out the concept and what was involved in terms of professional education and experience. The central principle is specialist care, multi professional care.

The idea is catching on. When I recently interviewed Per Anders Abrahamsson from the European Association of Urology, he said he supported PCUs, adding that non-prostate specialists had been treating the condition for too long. “We are definitely behind the concept of units. In many countries already, for example the UK, you now have to operate a certain number of cases a year and demonstrate follow-up and outcome to be allowed to carry out a procedure. I am convinced this is what will happen in all European countries.”

New paper sets the way forward

In August, the case for Europe-wide PCUs moves a step onwards with the publication of a new position paper from ESO in Critical Reviews in Oncology/Hematology, setting out the core criteria for defining the units in European countries. The criteria have been compiled by the PCU Initiative in Europe Task Force, established by ESO in 2012 to set standards for quality comprehensive prostate cancer care and designating care pathways in PCUs.

As Riccardo Valdagni says in the paper, there is a general cultural shift towards multiprofessional working which should win a consensus among the uro-oncologic community. But the influence of those who stand to benefit most could be crucial.

“The efforts of patient advocacy groups in increasing patients’ awareness about the importance of being treated and followed up in top quality centers are key elements for the success of the initiative,” he writes.







Stand up doctors: you are patients too

Simon Crompton

Simon Crompton

I count myself very lucky that, as a Cancer World journalist, I get to meet some of the top names in cancer treatment and research across Europe. There have been some fascinating recurring themes from my interviewees over the years: a seven-day-a-week commitment to work; the lasting influence of fellowships to the United States early in their careers; their faith in the younger generation of doctors and their ability to inspire their elders.

But there is one thing that none of these inspiring people ever say, and it has always puzzled me. While most will talk about the doctor-patient relationship and the fundamental importance of patient-centred care, none talk about themselves as patients.

Yes, it’s true that when I ask doctors or nurses about their own experience of cancer they will often tell me about personal or family episodes of illness. But for all our plentiful discussions about the importance of empathy and the intensity of the illness experience, health professionals still talk about “patients” as if they were a different category of person from a doctor or a nurse.

An ingrained them-and-us attitude

When entering into a conversation about, say, patient-driven research, I keep on half-expecting an interviewee to voluntarily say “Well, of course, I’m a patient too” and to talk about how their own experience has helped inform their approach. But they never do: even though 99% of those researching or treating cancer will themselves have consulted a doctor about some ailment at some stage of their lives.

Long-established patterns of working, traditional hierarchies, medical training and a perceived need for cool detachment seem to have ingrained the them-and-us attitude into health and professional systems. It almost seems as if many health professionals don’t dare associate themselves with those on the receiving end of things: they see it as necessary to be aloof, separate from the experience of illness.

Detachment clearly has its place. But it does seem odd that even enlightened health professionals seem to fear there is something unprofessional about openly consulting with feelings about what it’s actually like to be ill, worried and confused.

An odd Spartacus fantasy

Perhaps I’m wrong. It’s certainly true that some doctors have spoken very eloquently about how illness has made them reconsider their work. Oncologist Fazlur Rahman wrote brilliantly in The Oncologist (reprinted in Cancer World in March) about his experiences after a traumatic ankle injury, and how unfeeling doctors transformed his attitude to empathy in medicine. And before his death at the age of 37 in March, neurosurgeon Paul Kalanithi blogged wonderfully about how he handled waiting to die following a diagnosis of metastatic lung cancer.

But it seems odd to me that associating with the patient side often comes as a revelation. I suppose what I’ve been expecting all these years is a more everyday acknowledgement that, actually, the dividing line between health professionals and patients is an artificial one. I have an odd fantasy of a plenary session at an ECCO conference where, one after another, doctors stand up in the auditorium and declare, Spartacus-like, “I am a patient”.

It’s official: Top 10 research priorities revealed for brain & spinal cord tumours

stu farrimond portrait cropped

Guest blogger – Stuart Farrimond, editor of, blogs at

What research should be funded and who should get the money? It’s a fifteen billion euro question – and the answer you get depends on who you ask.

When I practiced as a doctor I believed that medical research should always focus on extending life and finding new treatments. After all, saving lives was why I entered the profession. Emotional, psychological and lifestyle factors are of trifling significance by comparison… or so I thought.

Eight years ago my perspective underwent a seismic shift after I was diagnosed with a glioma – a malignant brain tumour. Only then did I start to realise that well-intentioned research efforts can often miss the point. Treating the tumour alone may extend life, but as a cancer patient I know that life is more than added years. All too often, researchers can set their priorities based on what they consider important, what tickles their fancy, or simply based on with what they have experience in.

Two years ago, Dr Robin Grant, Consultant Neurologist, at the Edinburgh Centre for Neuro-Oncology, set out to find a broader answer to the question of what brain and spinal tumour research should be prioritised.

He gathered key leaders in primary central nervous system tumours, each with a wide network of influence in their speciality, to establish a James Lind Alliance ‘Priority Setting Partnership’. Over the next eighteen months, a collaboration formed between representatives of all those affected by brain and spinal cord tumours: patients, carers, major brain and spinal cord tumour charities and multidisciplinary professional organisations.

The ‘Top 10’ list of UK clinical research uncertainties in brain and spinal cord tumours was developed by the partnership, drawing on the expertise and experiences of all those directly affected by the conditions. Last week, the list was officially launched at the British Neuro-Oncological Society annual meeting, with a call for the assembled researchers and clinicians, and crucially research funders, to use it to inform and guide their own actions.

Here it is:


Top 10 priority research questions in brain and spinal cord tumours

1. Do lifestyle factors (e.g. sleep, stress, diet) influence tumour growth in people with a brain or spinal cord tumour?
2. What is the effect on prognosis of interval scanning to detect tumour recurrence, compared with scanning on symptomatic recurrence, in people with a brain tumour?
3. Does earlier diagnosis improve outcomes, compared to standard diagnosis times, in people with a brain or spinal cord tumour?
4. In second recurrence glioblastoma, what is the effect of further treatment on survival and quality of life, compared with best supportive care?
5. Does earlier referral to specialist palliative care services at diagnosis improve quality of life and survival in people with a brain or spinal cord tumours?
6. Do molecular subtyping techniques improve treatment selection, prediction and prognostication in people with a brain or spinal cord tumour?
7. What are the long-term physical and cognitive effects of surgery and/or radiotherapy when treating people with a brain or spinal cord tumour?
8. What is the effect of interventions to help carers cope with changes that occur in people with a brain or spinal cord tumour, compared with standard care?
9. What is the effect of additional strategies for managing fatigue, compared with standard care, in people with a brain or spinal cord tumour?
10. What is the effect of extent of resection on survival in people with a suspected glioma of the brain or spinal cord?


The lengths that the James Lind Alliance Priority Setting Partnership process goes to in defining ‘Top 10’ lists is staggering. In March 2014, around 200 people (patients, carers and health professionals) submitted more than 600 research questions on the treatment and care of brain and spinal cord tumours they felt needed urgent answers. These were refined, formatted and consolidated, weeding out questions that previous research has already answered. The resulting 44 questions were then put to another sample of over 200 people to rank in order of priority.

Last November, 29 ‘stakeholders’ used these results to hone in on the ‘Top 10’.This is the point at which I became involved. As both doctor and patient, my priorities were conflicted: the “patient” in me wanted research that could help me deal with symptoms; my “doctor head” however told me that physicians desperately need better treatment data.

These tensions were borne out through the diverse mix of professional and lay representatives. The experienced James Lind Alliance facilitators have the diplomacy skills that could broker peace in any conflict situation and, after six hours of carefully organised voting, ranking and discussions, we finally selected our top 10. Looking back now, it is difficult to imagine a fairer, more representative way to set cancer research priorities.

Thanks to Dr Grant and other volunteers and workers involved in the process, these priorities can now help ensure that future research efforts will improve the lives of cancer patients. After all, improving lives is why we enter our profession.


We welcome contributions to this blog. If you have a topic you would like to write about, please send your post to Corinne Hall – You can find our guidelines here – How to write a blog

Good journalism sparks change: nominate a cancer reporter today

Simon Crompton

Simon Crompton

A couple of weeks ago, I was answering questions about health journalism at a patient involvement seminar run by the charity Bowel and Cancer Research in London. The participants did not have a high opinion of journalists – at least it seemed that way. Wasn’t it true that they made up stories? Why did they say one thing one week, and contradicted it the next?

I had some sympathy. I remember, a few years back, that a national newspaper ran stories saying that meat both caused bowel cancer and wasn’t linked with bowel cancer on consecutive days.

But as the seminar went on, I found myself becoming increasingly passionate about the need for good journalism. Without reporters shouting about things, I argued, politicians, policy makers and even scientific institutions get stuck in old science, old assumptions, old complacencies. The participants, in turn, began to reveal their own appreciation of the way journalists had raised the profile of important cancer issues.

No true journalist makes up a story

This year I’ll be on the judging panel for the European School of Oncology’s Best Cancer Reporter Award for the sixth time running and, with the deadline for entries just a couple of weeks away, I’ve been thinking more about what a good cancer journalist actually is. No true journalist (I reassured the patient representatives at the seminar) actually makes up a story. But journalism isn’t simply about telling the truth.

The good journalists – the ones who get on the shortlist for the ESO BCRA Award – are the kind who will find out something that others can’t be bothered to look for. They’re the ones who’d rather not be told what to write, and will go to their editor with something different – beyond the run-of-the-mill game of copy-cat that national publications and broadcasters play. They’ll argue and fight to get that story published, even if the editor thinks it sounds a bit too serious (as happens very often).

And, if they’re writing about cancer, they’ll do it because they believe it’s important – because people’s lives and the quality of lives are at stake.

Making a difference

There are a lot of those kinds of journalists around and we see a good representation of them every year on the BCRA shortlist. They’ve produced demographic investigations into why poorer people die of cancer more frequently than affluent people; level-headed analyses of breast cancer overtreatment; a portrait of the neglect surrounding the growing cancer crisis in developing countries; and much much more – all in the mainstream media reaching thousands of people.

You can find past winners and their stories here.

I can guarantee that every one of the past BCRA winners and shortlisted entries has made a difference: whether it be to one individual reader, or to thousands of people with cancer by helping spark a change. Journalists aren’t saints, but the cancer community does desperately need them. Which is why, if you work in cancer, I’d encourage you to publicise the Best Cancer Reporter Award to any media contacts you have; and if you’re a journalist producing material about cancer, please enter. We need to show the world how good you can be.

You can find details of how to enter the BCRA 2015 here.

Best Cancer Reporter Award winners (2012-2014). Please click on the photos to view their stories.

Steve Buist, Hamilton Spectator, Canada

Steve Buist, Hamilton Spectator, Canada (2014 Best Cancer Reporter Award winner)

Tiffany O'Callaghan, New Scientist magazine, UK (2013 Best Cancer Reporter Award joint winner)

Tiffany O’Callaghan, New Scientist magazine, UK (2013 Best Cancer Reporter Award joint winner)

Joanne Silberner, freelance multimedia reporter, USA (2013 Best Cancer Reporter Award joint winner)

Joanne Silberner, freelance multimedia reporter, USA (2013 Best Cancer Reporter Award joint winner)

Bernhard Albrecht, Der Spiegel, Germany (2012 Best Cancer Reporter Award winner)

Bernhard Albrecht, Der Spiegel, Germany (2012 Best Cancer Reporter Award winner)


Why should older patients pay the price of failures of holistic care and HTA?

roger WilsonA debate between two medical oncologists over whether younger patients should get priority when it comes to access to very expensive drugs with the potential to prolong life was recently published online by Cancer World. In this guest post, Roger Wilson, a patient advocate and Honorary President of Sarcoma Patients Euronet, argues that giving patients a voice in these discussion is the only way to move on from these “simplistic, inward looking  solutions”.

The push to use age as a determining factor in drug funding permissions is blatantly discriminatory. There are better methods and measures for discerning eligibility, if only someone researched them properly.

The pharma industry is not interested in this research. Its business model (which determines its approach to pricing) is encouraged by the current inadequacy of HTA and political decisions such as England’s Cancer Drugs Fund. Indeed the latter encourages higher prices.

When the current UK government came to power in 2010 they vowed that by 2014 we would have a value-based approach to funding decisions. Its nearly 2015 and there is no sign of it but as there was no research into how value could be defined let alone measured, its no wonder we are back to simplistic thinking about age.

The core issues here are about the holistic treatment of a patient. Just looking at the disease (albeit hosted by a person) does not take into account the needs of the whole person. This debate should be about integrating supportive care into oncology practice, about losing the barriers between palliative care and oncology, about educating patients on the balance between cure and end-of-life care so that when disease is truly incurable patients make rational decisions themselves.

Another cycle of chemo given to a dying patient is immoral. Living and dying have to become palatable points for discussion. This will deliver benefits for individuals and society and could well cut drug costs. While politicians, healthcare administrators, academics and doctors are the main voices on this issue simplistic inward-looking solutions will result.

Get patients involved, introduce some earthy common sense.