Category Archives: Treatment

A pacifist’s guide to the war on cancer

Peter McIntyre

Peter McIntyre

I went to a musical… about cancer. A Pacifist’s Guide to the War on Cancer was given the song and dance treatment by Complicite Associates and the National Theatre in the UK where has played to packed audiences in Manchester, Exeter and London.

An anguished mother is trapped in an oncology waiting room as her baby undergoes tests. Patients come and go but, unable to leave, the mother moves from denial to bewilderment, despair and acceptance.

A bundle of tcancer cell_Francesca Millsumour cells appears like a rubber toy to give a quick teach-in on how cancers grow; later, inflatable tumours crowd the stage.

This may not sound like entertainment but A Pacifist’s Guide has laughter and defiance, good songs, fantastic dancing as well as very dark moments. None darker than when mother and audience sit for fully two minutes while we are all stunned by the sound of an MRI scan at full volume.

The script by Bryony Kimmings and Brian Lobol reflects the Susan Sontag assessment of illness as metaphor where everyone “holds dual citizenship, in the kingdom of the well and in the kingdom of the sick”. Both authors were committed to avoiding a ‘happy’ or ‘sad’ ending.

Lobel has been writing about cancer ever since he was cured of testicular cancer. “Most people are focused on going ‘back to normal’ and I realised that there is no normal. I was never normal to begin with but I certainly did not go back to being normal.”

Kimmings was interested in why cancer has so many warlike metaphors. ”Cancer seems to have a battle because it is much more terrifying to think that your body turns against you and that you have no control over it.” She sees A Pacifist’s Guide as a plea for greater honesty and understanding. “A common misconception is that it is going to be dramatic. Actually it is a very slow and boring and lonely and all over the place.”

The run of this high octane show is over but Complicite and the National Theatre are discussing if it will continue in some form. It would be good if the show could evolve so that patient outcomes are less detached from treatment options. Currently, its most powerful song presents cancer simply as fate:

“Fingers crossed; make a wish;

“What gruesome game of chance is this?”

It would also have been good to explore the relationship between health professionals and patients and the ability of patients and advocates to bring about change.

My overall feeling however was very positive. Cancer should be on the stage. Let’s keep making a song and dance about it.

Online you can watch authors and cancer patients answering questions such as What is the worst cancer-related advice you’ve ever heard? Start at the Complicite YouTube site

There is also linked site where you can join in a discussion of the issues.

Risks and benefits – what do we patients have a right to know?

Roger Wilson, a patient advocate and Honorary President of Sarcoma Patients Euronet

Roger Wilson, a patient advocate and Honorary President of Sarcoma Patients Euronet

The principle of informed consent is supposed to safeguard our rights as patients to accept or reject a proposed medical treatment on the basis of an understanding about the risks and benefits it offers.

There are big variations, however, in how it is put into practice, which may impact on the decisions patients take regarding, for instance, when to stop chemotherapy.

Last year, a Supreme Court judgement in a medical negligence case (Montgomery v Lanarkshire Health Board) updated what informed consent means in the UK, effectively bringing it more into line with the principle of shared decision making, by giving legal weight to the patient’s concerns and priorities.

Doctors must now ensure that patients are aware of any “material risks” involved in a proposed treatment, and of reasonable alternatives, with the legal test of what constitutes a material risk being decided by “whether, in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk… or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it.”

The Court spelt out that the duty to assess whether a patient would regard certain information as significant requires doctors to engage in a dialogue with their patients, and that it is not up to the doctor to make assumptions about how a patient would rate the significance of any given risk, no matter how small.

Information on quality of life

What does this mean in practice for cancer patients? Taking the example of decisions on taking chemotherapy, whether the intent is curative or palliative, doctors offering this treatment must be able to provide information about the impact on quality of life and prognosis.

A risk to quality of life can be as significant to a patient as any medical risk.  But while doctors have always been required to make information on medical risk explicit in the consultation, information about how patients experience impact on quality of life, presented in lay language, is often missing.

In the light of the Temel study of palliative care in patients with incurable non-small-cell lung cancer – which found that patients offered palliative care soon after their diagnosis tended to have less chemotherapy and yet lived longer – a failure by the profession to address this information gap could be regarded as some kind of professional conspiracy.

Information on prognosis

A recent Dutch study into making decisions about chemotherapy treatment indicates that doctors need also to be much clearer in informing patients about the extent of benefit they can expect. The study asked patients (including patients with terminal prognoses) about the levels of benefit (chance of cure, additional months, symptom relief) they would require to accept mild or intensive chemotherapy regimens. The responses, on average, indicated they would expect high levels of benefits  “beyond what is realistically achievable”.

Following completion of the questionnaire, all the cancer patients in the study went on to receive chemotherapy, despite the likelihood of benefit being in most cases below their stated minimum threshold, suggesting the majority entered treatment with unrealistic expectations, which raises questions about what information they were given and how.

The study went on to explore the reasons for the lack of realism among patients. It raised concerns about the quality of communication between patients and doctors, and it pointed to an earlier Dutch study which looked at collusion in doctor-patient communication about imminent death, and indicated that social attitudes such as “not giving up” reinforce unrealistic expectations and thus acceptance of toxic therapy.

A study of English data published in August offers an interesting addition to our insight on the overuse of toxic therapies in patients who do not stand to benefit. It looked at the use of Systemic Anti-Cancer Therapy (chemotherapy) in breast and non-small-cell lung cancer patients in England in 2014. The patients were divided into two groups, those treated with curative intent and those for whom the treatment was “palliative”, ie it could delay not cure the cancer. They analysed the outcomes for a total of 23,228 patients with breast cancer and 9,634 patients with non-small cell lung cancer in the two groups, and how many of these patients died within 30 days of their last chemotherapy treatment.

In the palliative care group 1289 (8.4%) died within 30 days, while in the curative group 0.3% of the breast cancer patients and 2.7% of the NSCLC patients died within 30 days. There is no evidence that the deaths are clustered, so it is reasonable to assume that practice standards are similar among all the providers although the authors highlighted a small group of outliers.

Patient reported outcomes measures

Where does this leave our rights to accurate information by which to decide on whether or not to accept chemotherapy, particularly in a palliative setting?

I think we need a rapid and comprehensive adoption of patient reported outcome measurements in oncology care, aimed at providing reliable evidence-based descriptions of the impact of systemic treatment on life quality and on the prognostic pathway.

Where is the research on what cancer patients see as significant risk? None of the existing quality-of-life tools are adequate – apart from anything else they measure a researcher’s view of the criteria that matter, not a patient view.

Only through patient-reported outcomes data, effectively communicated, can we reduce the number of patients having their last days affected by toxicity. Using patient reported data could also help doctors break the “collusion” reported in the study from the Netherlands. And in countries like the UK, where patients’ rights to information they consider significant is now enshrined in law, we might also avoid a situation where doctors could be taken to court.

 

 

All for one, and one for all! Patient power at ESMO 16

Irish melanoma patient advocate, Kay Curtin, blogs about what she took away from ESMO 16.

Irish melanoma patient advocate, Kay Curtin, blogs about what she took away from ESMO 16.

I had no preconceived idea of what ESMO 16 would be like, I applied with an open mind. How would it differ to other conferences in terms of the patient advocacy track would be the litmus test for me as a patient but also an advocate.

The Patient Track at ESMO made it feel I had a right to attend the conference – funny considering I am the one with the disease, the whole conference was based on!! But it has felt that way in the past, like you are being allowed to watch – this was different. This was not just for the medics, what we as a group had to say was just as important and relevant as anything that was revealed at the scientific presentation sessions. The topics covered were wide ranging and engaging, they ran not in parallel with the scientific sessions, but were given proper respect within the running order and it showed.

There was overflow needed for most Patient Track sessions, and those that were attending to listen were not just Patient Advocates, but the Oncologists, the Researchers, and the Pharma representatives. That’s because what we have to say is important and well informed – this is not our job it is our lives, so what could be more important to us?

Often the general public don’t understand the complexities of difference in cancer until you get one. It’s not a topic one reads up on for fun, most only keep up if they are personally connected. Also, all cancers are not created equal – it can become all too apparent that maybe you didn’t get the one with the most support or media air time or the most funding attached to researching it. But at the ESMO patient’s track this year I didn’t feel any of that. I felt instead part of a movement, a revolution of sorts that brought us all together bound by the one thing we have in common: a deep rooted desire to achieve the best for patients no matter what type of cancer they have. We are all in the same boat, there was no paddling your own canoe at ESMO.

“I felt part of a movement – a revolution of sorts”

Did I learn anything from my experience? YES. I am more confident in my connection now to Europe in my approach to my advocacy: I can reach out to many different branches of cancer communities, and advocacy support networks across the continent, and get help and information that’s still relevant to my community. We can help influence change that benefits patients wherever they live. Together, in solidarity we can achieve much more, we can work for equality of access and support for all, regardless of our cancer type or geographical location, we don’t leave anyone behind it’s a sort of unwritten rule, we go back to pick them up and carry them with us, all for one and one for all.

Kay Curtin also blogs at https://irishmelanomapatients.wordpress.com/

Extreme oncology in Romania

Geta Roman is a Bucharest-based freelance journalist writing about history and medicine. For more than 10 years she was a health editor for Romanian newspapers Cotidianul and Evenimentul Zilei

Geta Roman is a Bucharest-based freelance journalist writing about history and medicine. For more than 10 years she was a health editor for Romanian newspapers Cotidianul and Evenimentul Zilei

Being an oncologist in Romania is an extreme job. Being a patient with cancer in Romania is an extreme experience.

We have 250 oncologists to care for at least 500,000 people with cancer (the figures are uncertain because the National Cancer Registry is not up and running). Our hospitals are crowded, we lack medication, many patients waiting for chemotherapy or radiotherapy, and doctors and nurses are overwhelmed. At the same time, oncology is a field rife with corruption, with the patient caught in the middle.

The National Health Insurance and Ministry of Health are trying to find solutions: more money has been offered to doctors who work in emergency departments, and the private sector is now involved in providing radiotherapy and chemotherapy treatments, paid for by National Health Insurance. But it’s nowhere near enough to resolve the crisis in our cancer services.

The young doctors who are preparing to take the place of the older generation when they retire, and the older doctors who are forced to care for more patients than they can handle, propose the same solution for resolving this crisis: more money for doctors’ salaries, to keep them from leaving the country.

An experienced oncologist earns around €1,000 per month working in the public health system, while the younger ones earn only around €300-400 depending on their experience.

Flori Vladutescu is a Resident doctor in her second year in one of the biggest hospital in the country. She chose to become one because of the impact of cancer on her own life: her mother died from breast cancer when Flori was only four years old, and in the past years she has given close support to her sister, who was diagnosed with stage III breast cancer. She would like to know whether they have the breast cancer gene mutation, but the tests are too expensive, and are not covered by the public system.

Right now, Flori has decided to stay in Romania to care for people with cancer. She’s been promised a job in Giurgiu, 60 km from her hometown, Bucharest. “Cancer patient are special, more sensitive, you have to work with them to solve the physical problems, but you need a special attitude. I learnt that from my oncology teachers, who are also different – nicer, more human…” says Flori.

Initially she had intended to leave the country after finishing her residency. But she changed her mind, and is set on taking the job in Gurgui. “I’ve already gone there. I met the doctor who I will work with, and I saw all those patients who need help. I felt for them.” Her biggest challenge, she says, will be how to manage financially. “Half my salary will go on petrol, if I choose to commute from Bucharest every day” She think she may look for somewhere more local to stay.

“Half my salary will go on petrol”

The doctor in charge of the oncology outpatient clinic in Giurgiu, Florin Onisim, says that poor organisation ends up wasting doctors’ time, making an impossible job even more impossible. A new system of electronic registration was implemented over the past year, but no additional staff were recruited to input all the data. “It is extremely bureaucratic,” says Onisim. Before this system, I was able to see 70 people daily, now only around 30–35,” he says.

People living in and around Giurgiu are relatively lucky in one respect – they live not far from Bucharest, which has the biggest concentration of public and private cancer services in the country, so most of them have the option to travel to find an expert.

The situation is worse in other parts of the country. In Vaslui, one of the poorest cities, along the eastern border of Romania, the county hospital – which caters for a population of 375,000 – has no oncologist at all. In Resita, a city with 65,000 people, in the west part of Romania, the only oncologist in the area is responsible for the more than 8,000 patients recorded in the cancer registry.

Every time the local authorities try to hire oncologists, they face the same obstacle: no doctors are interested in going there, because of the low salaries offered by public hospitals. They prefer to join the exodus of more than 10,000 doctors who have gone to work in other European countries since 2007, when Romania became an EU member. Or they stay and work in the private sector in Romania.

The solution to both is better payments for doctors.

Cancer patients receiving chemotherapy at a major Bucharest hospital

Cancer patients receiving chemotherapy at a major Bucharest hospital

Setting the record straight on cancer research

Buist-colour

Cancer research is about testing evidence strenuously and objectively and can’t be judged by innuendo, conspiracy theories and pseudoscience, writes Steve Buist.

First things first. I’m not a doctor, and I’m certainly not an oncologist, so do with that information what you wish.
I do have a degree in biological science, and I’ve written about cancer for the past 18 years, which has given me the chance to learn from some of the best researchers around.
Science is the process of gathering information through the ongoing application of critical thinking. Science is about evidence and testing that evidence strenuously and objectively.
I believe in evidence-based medicine. I also believe in evidence-based journalism.
Recently, the Hamilton Spectator published an opinion piece with the provocative headline, “War on cancer, like the one on drugs, has failed us.
The piece relied heavily on innuendo, conspiracy theories and pseudoscience rather than evidence. I think it was irresponsible, bordering on dangerous.
Among the piece’s most absurd statements: that there is no known cure for cancer, that we should stop looking for a cure for cancer, that Big Pharma is sitting on a cure for cancer (which seems contradictory to the first two points), that people don’t die of cancer, and that 75 per cent of doctors would refuse chemotherapy themselves.
Where to even begin?
Let’s tackle the last point first, which the author stated came from “one survey” he had seen.
It turns out that, upon closer inspection, the 75 per cent figure has been taken out of context  from a survey that asked doctors a very specific question about a very specific type of harsh chemotherapy for a very specific type of incurable cancer in its terminal stage. That’s irresponsible.
No cure for cancer? That will come as a surprise to the many men who have been treated successfully for testicular cancer, which has a 97 per cent survival rate, or prostate cancer, which has a 96 per cent cure rate (based on five year survival). For women with breast cancer, nearly 90 per cent of them can expect to survive five years or more.
Overall, two out of three cancer patients will now survive at least five years, the amount of time once considered the standard to be deemed a cure. That’s up significantly from about 50 per cent two decades ago.
Could medicine be doing better? Sure. The war on cancer has been disappointing, if a 100% survival is seen as the goal. Treating metastatic cancer remains a particular challenge.
But part of the problem is that we’ve given one label – cancer – to a disease with a couple of hundred different types. It’s not surprising that finding solutions to hundreds of different problems has proven to be a challenge.
There is no one cancer and what’s become clear is there’s no one magic bullet that eradicates it.
Big Pharma sitting on a cure until they figure out how to monetize it, “as has been rumoured for years,” according to the author?
That’s out there with the faked moon landing type of conspiracy theory.
I’ve been critical of the pharmaceutical industry but that’s a level of cynicism even I can’t comprehend. It’s also highly insulting to the people who have to treat cancer every day.
Do you think someone is sitting on a cure for heart disease because they’re trying to figure out how to monetize it? Osteoporosis? Dementia? Diabetes?
Why would anyone think cancer is different?
Besides, there’s already a simple and effective way to monetize these things – prove that they work and the world will beat a path to your door. Can you imagine what would happen to the stock price of a company that announces it can cure cancer?
Oddly enough, there is one point we do strongly agree on – not enough is done to promote the prevention of cancer.
More than half of all cancer cases are preventable. Changing our behaviours – no smoking, more exercise, better diets, less drinking, protection from the sun – could seriously reduce the cancer burden.
But it still means a significant chunk of cancer can’t be prevented.
People do die from cancer. Too many people. Treatments are still needed.
All the more reason why the war on cancer must continue.

Steve Buist is the Spectator’s investigations editor. He has written several multipart series on cancer and in 2014, he was named best cancer reporter in a competition sponsored by the European School of Oncology. You can read his winning entry here

Filling the knowledge gap on active surveillance

Simon Crompton

Simon Crompton

Active surveillance of men with localised prostate cancer is becoming increasingly popular. It is an observational approach, involving regularly testing, allowing men with low risk prostate cancer the opportunity to avoid or delay aggressive treatments.

Potentially, it’s of huge benefit to thousands of men: a recent study indicated that just 1% of men whose low risk prostate cancer is managed through active surveillance go on to die of the disease.

But, as delegates in Milan at last month’s third ESO Conference on Active Surveillance for Low Risk Prostate Cancer discussed, a big question looms: how do you identify the right men for active surveillance? Clearly, the implications of incorrectly defining “low risk” are major.

The problem is that you have to follow men for a long time to discover whether their prostate cancer will, in the end, prove life-threatening. The likelihood of cancer causing death depends on both the tumour (aggressiveness and extent) and the patient (age and co-morbidities). Without long-term studies characterising the type of disease and person suitable for active surveillance, selection is difficult.

How to define low risk?

In their absence, researchers are trying to find predictors of disease progression to support risk-based selection of patients. Existing prediction models help but, as Ewout Steyerberg from the Centre for Medical Decision Making at Erasmus University pointed out in Milan, much stronger predictors are needed to separate low risk from high risk patients.

The answers are likely to come from large studies analysing existing data from men with prostate cancer – and in particular a major study funded by the Movember Foundation, known as the Global Action Plan 3 project, or GAP3.  Movember has five GAP projects, but GAP3 specifically addresses the question of how you select the right men for active surveillance.

It aims to create a global consensus on selecting and monitoring men with low risk prostate cancer through studying the cases of 10,491 men across 19 institutions worldwide. This is the largest prostate cancer active surveillance database, comprising the majority of the world’s active surveillance patient data.

The significance of GAP3 to preventing overtreatment in prostate cancer cannot be underestimated. Today, one and a half years into the project, all the data from participating centres has been uploaded into a central database. Each patient’s clinical history and biospecimen, imaging and biomarker data is being analysed.

This analysis, due to be complete in August this year, will feed into a simultaneous expert review of all current active surveillance guidelines available around the world, leading to a new consensus guideline setting out which patients are suitable for active surveillance, and what are the most effective ways of monitoring them.

And the end result – available in perhaps 18 months’ time –  will be a web-based platform, based on the guidelines and using risk-based modelling derived from the new analysis, to help clinicians decide which patients are suitable for active surveillance.

Perhaps just as importantly, as Sophie Bruinsma from Erasmus Medical Centre pointed out in Milan, it will also provide some reassurance to men that that they have made the most sensible, risk-based decision about their disease.

0

Uganda says “we can” on World Cancer Day

Guest blogger – Esther Nakkazi, freelance science journalist

Guest blogger – Esther Nakkazi, freelance science journalist

“We can – I can – get involved in cancer prevention and control”

This is the theme for World Cancer Day being promoted by Ugandan health ministry.

And this year it seems that the government is not just talking the talk, it is walking the walk with plans to provide the legal basis and funding to support a comprehensive approach to cancer control in the country.

When the 10th Parliament convenes after the May elections, the Cancer Bill will be high up on the agenda.

Its primary objective will be to establish the Uganda Cancer Institute as an autonomous agency of Government mandated to undertake and coordinate the prevention and treatment of cancer and cancer-related diseases and conduct research.

With only 25 oncologists in the whole country, Uganda currently struggles to care for the almost 30,000 people who are diagnosed with cancer every year. Speaking at a press conference at the Ministry of Health ahead of World Cancer Day, Jackson Orem, Director of the Uganda Cancer Institute, spoke of his hope of increasing survival from the current rate of 20% to 50%, through improved prevention, earlier detection and care. And he sounded confident the proposed measures would be debated as planned. “The Cancer Bill is already before the committee of health. It will be their priority in the next parliament,”he said.

With 60% of new cancer cases caused by infections, immunisation programmes will be key to cutting new cases. Cervical cancer, associated with infection with the HPV virus, is the single biggest cause of cancer death among women, with Kaposi sarcoma, associated with HIV infection, and liver cancer, associated with hepatitis also major killers.

Anthony Mbonye, the commissioner for community health services at Uganda’s Health Ministry, spoke of the government’s commitment to vaccination programmes. “Human Papilloma Virus (HPV) vaccination against cancer of the cervix is now available across the country and girls aged 10 years can access it in all our health facilities,” he said, adding that the Hepatitis B vaccine is now part of the routine childhood immunisations, and vaccination is also available for adults in high-burden districts, and will soon be available across the country.

As an autonomous agency, the Uganda Cancer Institute will be a corporate body governed by a Board of Directors. The Bill spells out that the Institute will undertake and coordinate the prevention and treatment of cancers in Uganda, including providing comprehensive medical care services to patients affected with cancer and other cancer-related diseases, and coordinating cancer-related activities both within and outside Uganda.

The Bill also provides for the Institute to conduct on-the-job training in oncology and related fields for its staff as well as to provide public education and training on cancer.

Importantly it includes provisions for funding the Institute and its work.

Orem hopes this will be an important step to establishing a truly national cancer service. “We want every cancer patient to be diagnosed and followed up. We need to get their contacts so that they are always within our systems,” he said.

But his aspirations go beyond Uganda’s own borders. “The UCI,” he said, “will be the centre for training oncologists in East Africa in an effort to increase human resource in the region.

Grand opening of the new Ugandan Cancer Institute buildings May 2015

Grand opening of the new Ugandan Cancer Institute buildings May 2015

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

Closing the 40% survival gap in Gaza

 

shayma wahaidi cropped

Shaymaa Al Wahaidi is a pharmacist trained in public health who is about to return to Gaza to support efforts to improve diagnosis and care of breast cancer patients

In Gaza, only around 50% of women diagnosed with breast cancer will still be alive five years down the line, compared to almost 90% in countries like the UK and USA.

 

I’m a Palestinian pharmacist from Gaza, and I’m about to return there after completing a Public Health course in Oxford, with a view to becoming a public health researcher. My current interest is the lack of support for early diagnosis for women with breast cancer in Gaza. I used to work with breast cancer patients, and I’ve noticed that women in Gaza often present late for diagnosis and have many fears associated with the disease.

 

The poor rate of breast cancer survival partly reflects cultural attitudes about breast cancer. Some women, for instance, worry about being divorced if they were to be diagnosed with the breast cancer. As result, even if they suspect that they have breast cancer, they sometimes prefer to keep silent and die waiting.

 

But women can also be deterred from seeking a diagnosis because they know how hard it can be to get access to treatment. Once diagnosed with breast cancer, women face many challenges, and it has been suggested that their treatment in Gaza is below acceptable standards. A few years ago, the Ministry of Health had to appeal to international bodies after stocks of almost 15% of essential chemotherapy drugs ran out, and adherence to scheduled treatments for breast cancer was impossible due to the erratic supply of medicines.

 

This problem has not been resolved. Last December, breast cancer patients in Gaza organised a demonstration in protest that the medication they need is still not available, and even when it is available, it is unaffordable.

 

Part of the problem is poor use of meagre resources. There’s only one histopathological laboratory, and there are no facilities for radiotherapy. And yet there are currently four mammography units in Gaza, despite the evidence-based research that challenges whether women in general derive any benefit from mammographic screening. Most of the time hospitals cannot import the chemicals used for the mammography X-rays anyway. Considering Gaza’s disastrous economy – half the population lives on less than $3 per day – spending money on mammography facilities, which charge around $27 per appointment, is not justifiable.

 

It is my hope that we can start to improve the situation for women and for breast cancer patients in Gaza if we start to direct research attention to how we can improve our healthcare facilities, train up personnel in breast cancer investigation and treatment, and improve adherence to treatment guidelines.

 

We also need to conduct detailed investigations to understand more, for instance, about women’s experiences and perceptions regarding adherence to treatment, and about their quality of life and their experiences after mastectomy.

 

As long as health services in Gaza are unable to offer adequate treatments for breast cancer patients, Palestinian women will continue to die from a disease which in many countries is seeing increasingly high survival rates. In addition, until significant steps are taken in early diagnosis, women will continue to present at a late stage of the disease, when the chances of prolonging their lives are reduced.

 

I hope that when I return home in a few weeks’ time, I will be able to use what I’ve learned to start to make a real difference.

Breast cancer patients and survivors help other patients by sewing prosthetic breasts that are distributed free

Breast cancer patients and survivors help other patients by sewing prosthetic breasts that are distributed free

The multiple problems women with breast cancer face in Gaza have been captured in a moving animation, “Fatenah”, which follows the journey of one woman from her delayed diagnosis to the multiple delays, stress and humiliation involved in getting access to the right treatment 

Fatenah

 

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

“The purse is closed!” – this is no way to run a hospital

Rosa Giuliani, medical oncologist, S. Camillo-Forlanini Hospital, Rome, Italy

Rosa Giuliani, medical oncologist, S. Camillo-Forlanini Hospital, Rome, Italy

 

As a medical oncologist my primary interest is in helping patients to live longer and better. The best part of my job is the integration of clinical and molecular views: see the problem in the clinic, look for answers in the lab, bring back the solution to patients. I wish it could be as simple as that.

Research & development have a price, which is often difficult to understand. Why new drugs and devices cost that much, and not a penny less, is a complicated conundrum for many of us. The EU regulatory and reimbursement systems, the lack of a universal health policy through Europe and the profound economic crisis are regularly debated.

While I was at ECCO participating in debates on the need to promote equity and defeat disparities in access to precision medicine in Europe, hospital managers where I work notified the oncology department that the budget allocated to cancer drugs expenditure was over:no “expensive” drugs could be purchased until the budget for the new year will be discussed in January. The purse was closed. Meetings followed, some very unpleasant; poor use of resources by medical staff was implied, not even too subtly. Of course, this prompted self-examination: am I a good oncologist? Am I following guidelines? Am I spending money for my pleasure to give drugs?

After this last question, I realized that I was losing my mind and luckily, I returned to my senses. I respect rules, I need rules, I love rules. I appreciate fair rules. Budget negotiations at local hospitals are as obscure as the procedure of setting prices at EU or national level. A rule, which lacks of transparency, is not fair. The fact that the rules are set and dealt by people who are not prepared to manage the process, is terribly wrong. The overwhelming gap between cancer politics at EU Headquarters, where precision medicine is being promoted, and cancer politics at local level, where the only interest is that 2+2 should be equal to 3, because 4 is already too expensive, is frightening.

Money is an important part of the equation: resources are not infinite and their rational employment is of utmost importance. The process of drug development is not cost-effective, and many managers are not, because they have not been adequately prepared to deal with a different type of economy. Cancer medicine cannot be dealt as if providing water or electricity.

The global curriculum for being a good medical oncologist has dramatically changed in the past 10 years. Medical oncologists in 2015 cannot neglect molecular biology, health policies, precision medicine and so on. The same change should happen with managers who allocate resources for health politics, especially at hospital level. Being a good accountant does not suffice anymore, just as being exclusively a good clinician is not enough. Another level of knowledge and preparation is needed. And honestly, sometimes, a little bit of emotional intelligence would not do any harm.

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

 

 

 

 

Smoke gets in your eyes

Simon Crompton

Simon Crompton

The title of Europa Donna’s annual London symposium last week was “New directions in breast cancer”. By the end of the evening, possible new directions were clear, but the route to take was not.

One of the two speakers was Daniel Leff, a cancer surgeon from Imperial College London, who addressed the difficulties of defining the correct margins when surgically removing breast cancer. The object had to be, he said, reducing the chances of reoperation.

He tantalised the audience with the question: “Can surgical smoke be informative?”

Potential of spectrometer analysis

Researchers at Imperial have used mass spectrometers to analyse the smoke arising from tissue incision with electrosurgical knives – a technique known as Rapid Evaporative Ionisation Mass Spectrometry (REIMS). Different types of cell produce different chemical concentrations when burned, so the chemical profile can indicate whether the tissue being cut is cancerous or not.

Identification of cancerous tissue using the technique during surgery, said Leff, was 93% accurate.

It’s a truly impressive technological development, that has potential to radically reduce reoperation rates for breast cancer.

The cost question

But how much did the machinery cost, asked a member of the audience? Half a million pounds, answered Leff. And how much did a pathologist cost? The answer was not given, but the point was made…

Pathologists already have advanced (and cheaper) techniques which can accurately indicate to surgeons which areas are cancerous and which are not. The question, said audience members, was why they were not being used. Leff himself acknowledged that pathology analysis using frozen section and touch imprint cytology were highly effective ways of determining the extent of breast disease and reducing the need for re-excision. But they are not widely used in the UK.

Novelty intoxication

On the systemic therapy side, Stephen Johnston, Professor of Breast Cancer Medicine at the Royal Marsden Hospital, spoke of the real promise of the drug Palbociclib as a first-line treatment for ER-positive breast cancer, and (in combination with Fulvestrant) as a second-line treatment as well. The cost of Palbociclib? Around £90,000 for one year’s treatment. The pressing question of how such expensive drugs are to be made widely available was raised, but not addressed.

New directions in breast cancer are exciting, involving, often inspiring. But we know how easy it is to become intoxicated with novelty and infatuated with technology. Sometimes, it isn’t new directions we need to hear about, but what is already here but under-utilised – and how we can best use what is proven, affordable and practicable to benefit the greatest number of women possible, as soon as possible.

Europa Donna, the European Breast Cancer Coalition, has a Facebook page.