Blood cancer — always at the forefront of research

There are some 250,000 people in the UK living with blood cancer, a sub-set of the disease that has caught up with 1 in 16 men alive today and 1 in 22 women. Some 40,000 people each year in the UK are diagnosed with blood cancer, and 15,000 people die from it.[1] This makes it the third biggest cancer killer in the UK, after breast and prostate.

It is a strangely intangible disease. Brains, lungs or breasts are easy to understand—we know where they are and what they are there for. By contrast, most of us know very little about our bone marrow, where blood cancer originates, or what our lymph glands do. There are about 100 different sub-categories of blood cancer, many categorised as leukaemia (from the Greek words for white blood) or lymphoma, which strikes in the lymph system.

But precisely because blood is so accessible for testing, this kind of cancer has always been at the forefront of cancer research. “The very first descriptions of genetic abnormalities happened in leukaemia,” says Prof John Gribben, one of the world’s leading blood cancer experts with more than 500 publications to his name. After a long career at Harvard, he is now based at the Barts Cancer Institute in London, specialising in leukaemias and lymphomas. “This led to our first proper understanding of the molecular make-up of cancers, and this in turn led to discoveries in the treatment of solid tumours.”Gribben pic

The breakthrough came in 1959 when researchers David Hungerford from the Fox Chase Center and Peter Nowell from the University of Pennsylvania School of Medicine identified the so-called Philadelphia Chromosome. Named after the city where both were based, this was the first time that a genetic mutation was linked to cancer. Nowell and Hungerford discovered that people with chronic myeloid leukaemia (CML) have one abnormally short chromosome (number 22).

A freakish translocation found to cause cancer

It took more than a decade for scientists to work out precisely what was going on: in the 1970s, Dr Janet Rowley from the University of Chicago demonstrated that the abnormality came about because of a freakish “translocation” of DNA from one gene to another. The new, malfunctioning hybrid gene (called BCR-ABL) switches on the production of cells – and never switches off. “It’s as if the traffic light is constantly on green when it should have been red,” says Gribben. Thus, scientists discovered the first oncogene – cancer gene – that led to a revolution in cancer treatment.

At the time, doctors were relying on chemotherapy – as we have seen a blunderbuss technique that blasts all cells, good and bad – or other drugs that offered short-term respite but not a cure. The prognosis for CML was poor, ditto for acute lymphoblastic leukaemia, where a similar oncogene was found to have a role an aggressive cancer. This is the most common type of the disease to be found in children and younger people. Kids could be offered a bone marrow transplant, a highly risky procedure that up to 50 per cent of patients would not survive. Doctors would be happy if they could keep their patients alive for a year or two after diagnosis. What if you could develop a drug that targeted a specific genetic abnormality?

Imatinib — the first wonder drug

The first of these so-called targeted therapies, aimed at CML and other blood cancers, came to market in 2001. Jointly developed by Drs Brian Druker (of Oregon Health and Science University) and Nicholas Lydon (then working for a drug company that became Novartis), Gleevec (or imatinib) was a wonder drug that had an astonishingly positive impact on patient outcomes. Early trials showed that 98 per cent of people on the drug were in full remission five years after treatment.

“For a lot of people, Gleevec was simply too good to be true. But these once-dying patients were getting out of bed, dancing, going hiking, doing yoga. The drug was amazing,” Dr. Druker said in a 2009 interview with the New York Times.* Now we know that people treated with this drug are as well as people who don’t have cancer at all. There is a more than 90 per cent chance of a full cure for children with acute lymphoblastic leukaemia, and the drug is approved for the treatment of ten different cancers. Not for nothing was this the first cancer drug to feature on the front cover of Time magazine.

It worked by targeting the malfunctioning gene, in effect producing a chemical reaction with the BCR-ABL abnormality, turning the traffic light to red and stopping the ceaseless reproduction of malignant cells. Although the absolute number of people with CML and associated diseases was small, the principle of targeted gene therapy was revolutionary and is at the heart of subsequent advances in the treatment of blood and other cancers.


[1] Source:

RIP Clive James

Clive James, the Australian wit, broadcaster and poet died last Sunday at the age of 80, ten years after being diagnosed with CLL. Clive James pic

He wrote the best — the only? – poem about chemotherapy, specifically about Ibrutinib. the wonder drug that helped keep him and many thousands of others alive for a lot longer than expected. Here it is:


The Marvel Comic name should tip you off

That this new drug is heavy duty stuff.

You don’t get this one just to cure a cough.

A chemo pill, and powerful enough

To put the kibosh on your CLL,

It gets in there and gives the bastard hell.


Five years’ remission and the beast is back.

It’s in your bones the way the Viet Cong

Poured through their tunnels to the Tet attack,

And what comes next might not last very long.

But let’s see what Ibrutinib can do

To win the war whose battlefield is you.


Ibrutinib, you little cluster-bomb

Of goodness, get in there and do your thing!

All that the bad guys seek is martyrdom:

Their own demise is the death they bring.

They work in cells. There is no high command.

We let you in and then it’s hand to hand.


Should you prevail, we promise you a role

From here on until the natural end.

Just beat them back and it will be a stroll,

Unless you don’t, in which case things might tend

To go bananas in a serious way.

But not yet. Down the hatch. This is today.


Inspirational stuff — and Ibrutinib really is a remarkable drug, a pill rather poisonous goo, showing the way to targeted treatment of leukaemias and other cancers. Only Clive James could make it sound so poetic!

The Weirdness of Watching and Waiting

Not all cancers are treated quickly…

Lord Saatchi, the advertising mogul who lost his wife to cancer, has likened chemotherapy to medieval torture. As we saw in my last post, drugs like bendamustine are becoming more targeted, but still chemo is a blunt instrument. It does a lot of harm to other, perfectly healthy parts of your body, your immune system for example, as well as hitting cancer cells. This is a price worth paying perhaps if it is going to put your cancer into remission.

But not all people diagnosed with cancer are treated with chemo, or treated at all. Some 15,000 people in the UK are on what is known as a watch and wait routine, which is a bizarre state of affairs where your cancer is diagnosed but then left alone. This is counter-intuitive, in that we all know people die because their cancers are not spotted until too late. Early treatment surely makes the difference between a good and bad prognosis. So why delay? It seems strange, even reckless, to defer the inevitable, especially since the disease is still advancing.

…in fact, treatment can be postponed for as long as possible

For certain types of blood cancer, however, doctors say it does make sense to postpone treatment for as long as possible. These diseases have different properties from solid tumours that you might find in bowel, brain or breast, for example. With the latter, doctors will move as quickly as possible to excise the cancer, and treat the patient thereafter with radiotherapy and or chemo to mop up any remaining malignant cells. But blood cancers have often spread far and wide through the body by the time they are discovered, without cohering into one big lump that constitutes a target. Since there is often no prospect of a cure, there is no point in using up the arsenal of possible treatments before absolutely necessary.

Under these circumstances, the doctor’s job is to keep it under control and treat it when necessary, so it doesn’t get out of hand. Studies show that early deployment of chemo or similar conveys no advantage in terms of long-term survival, when compared to being treated later on. And in the meantime, the science of drugs medicine is advancing rapidly, which means that by the time you stop watching and waiting, there may well be new drugs available that will prolong your life.

But this is little consolation when you find yourself in the bizarre position of having advanced incurable cancer, yet being left alone as if the disease had never existed. One doctor told me his patients thought he was mad when he told them they were going on this regime: my sentiments exactly. In the battle with cancer, the enemy is identified, the guns cocked and loaded, but we’ve decided to hang out and be peaceful for a while. Meanwhile, you check your body every morning for lumps and bumps. Not for nothing is watch and wait often called the watch and worry regime.

Bombing of Bari

How WW2 raid was a milestone in history of cancer treatment

On the night of December 2, 1943, the German Luftwaffe launched a surprise attack on the port of Bari in southern Italy. The harbour was crammed with allied shipping and the city crowded with military personnel and civilians. Eighteen ships were destroyed in the raid, a further eight seriously damaged – and over 1,000 people were killed.

For the allies, massing troops and materiel for the assault on the Axis-controlled Europe via the Italian peninsula, this was the worst shipping disaster since Pearl Harbor. For countless Italian civilians, it was a human catastrophe. But, bizarrely enough, the bombing of Bari was also a milestone in the history of cancer treatment.

The allies were tragically complacent, thinking they were beyond the reach of German bombers. There wasn’t even a functioning radar system to give the alarm. There were gigantic explosions as one defenceless ship after another was hit. Multi-coloured flames leapt 1000 feet into the sky and the sea filled with fuel oil, flames blazing in a 40-foot wave of fire above the water. Clouds of suffocating black smoke settled on the harbour and on the town.

proper try bari

One of the American ships to be destroyed was the John Harvey, a merchant vessel that had been waiting in the harbour for days to unload its secret cargo of deadly mustard gas, a poison used to horrific effect in the trenches of the First World War. Responding to intelligence that the Axis forces were preparing for chemical warfare, President Franklin Delano Roosevelt had ordered his troops to be supplied with 100 tons of the gas, to be used in retaliation to Axis chemical attacks or to seal off territory from the enemy.

Merchant ship carrying secret cargo

Captain Knowles of the John Harvey, together with a handful of officers and crew, were aware of what they were carrying. But he was under strict orders not to tell a soul, even the harbourmaster who might have expedited the unloading of the clandestine load. It would have been a diplomatic disaster had the world learnt that the allies were shipping chemical weapons to the European theatre. So when the ship exploded, taking Knowles and his crew with it, there was nobody left alive in Bari who knew about the ship’s deadly cargo.

Equally, nobody was aware that the clouds of smoke blanketing were full of poison gas, or that the fuel oil in the harbour had also combined with the gas to create a deadly soup. Twelve to thirty-six hours after the attack, more than 800 servicemen and countless civilians who had inhaled the gas or even been in the contaminated water, began to present with mysterious blisters and burns all over their bodies. Many died agonising and inexplicable deaths, as none of the overstretched medical personnel knew what they were dealing with. Medics made matters worse by keeping the patients swaddled in blankets, the correct treatment for shock but precisely wrong for those dunked in the mustard-in-oil mixture.

Toxic agent suspected

In time, doctors came to suspect that some toxic agent was at work, thinking that the Germans had used chemical as well as high explosive bombs in their raid. Lieutenant Colonel Stewart Francis Alexander, a chemical weapons medical officer attached to the US general staff, was sent to investigate. He was working blind, without input from those US authorities who knew the Jean Harvey’s secret, but he quickly came to the conclusion that mustard gas was the culprit. He worked from first principles, examining the victims and the evidence of the raid. More than 600 patients were tested. Blood and liver changes were highly suggestive of mustard. He soon established that bomb casing from the bottom of the harbour contained traces of the gas as well, and that these bombs belonged to the allies rather than the Luftwaffe.

A surprising cancer connection

Alexander’s official medical report, circulated in May 1944, made clear that the mustard case had done especial damage to the victims’ lymphatic system and bone marrow. Thus the cancer connection: scientists at Yale University and elsewhere had long suspected that mustard-based chemicals would be effective in controlling certain cancers, particularly lymphoma and leukaemia which are caused by disorders of the tissues that form white blood cells. Alexander’s evidence was akin to an unorthodox drugs trial, proving as a result of tragic circumstances that mustard-based compounds could be effective in attacking these cancers.

This research remained intensely secret, as the allies wanted to keep under wraps the fact they had shipped the gas to Europe. Prime Minister Winston Churchill went so far as to ban any mention of mustard from British reports of the Bari disaster. Yet doctors made progress and in November 1947, Dr S. Farber of the Children’s Cancer Research Foundation gave a nitrogen mustard compound to a group of 16 children who were seriously ill with acute leukaemia. In ten out of 16 cases, the children saw a dramatic improvement, with tumours and lymph nodes shrinking and their bone marrow returning to normal. Doctors at Yale treated a man with an aggressive tumour in his neck caused by Non-Hodgkins Lymphoma: the drug had an immediate and positive impact.

At this stage in the development of chemotherapy, the drugs were exceedingly poisonous and mortality rates high. The focus of research in post-war US shifted to surgery and radiotherapy. But in East Germany, the former German Democratic Republic, research into mustard-based chemotherapy continued apace. In 1963, scientists succeeded in producing Bendamustine, a drug made from nitrogen mustard, used to this day to treat lymphomas and other blood cancers.

Bendamustine has the distinction of being the only major cancer drug to have emerged from behind the Iron Curtain. For decades, it was available in East Germany and nowhere else. After the wall came down in 1989, it was soon made available in Western Europe. The US, more suspicious and unwilling to remember the lessons of Bari, approved the drug only in 2008.

How Brexit nearly derailed a key cancer trial

In mid-February, leading oncologists received a letter from an international drugs company that appeared to confirm their worst fears about the impact of Brexit.

With the prospect of a no-deal looming, Kite, a subsidiary of the biotech giant Gilead Sciences, warned in the letter that it might have to cancel the UK part of a pioneering trial which aimed to prolong the lives of people suffering advanced blood cancer.

The trial, called Zuma 7, targets people suffering from relapsed/refractory diffuse large B-cell lymphoma, a common form of blood cancer. It was launched early last year as a global study involving hundreds of patients in 61 research locations around the world.

Zuma 7 involves CAR-T therapy, a state of the art technique under which cells are taken from patients and modified in the lab before being infused back into their bodies. In earlier trials, this has been proven to hold off the progress of cancer in advanced or otherwise hopeless cases.

This cellular engineering is at the cutting edge of anti-cancer science and demonstrates the complexity of supply chains in the pharmaceutical industry. With Brexit looming, this poses real problems for UK patients wanting to access world-class medicines.

Cancer cells taken from the patients were due to be harvested in the UK and exported to laboratories in the Netherlands for freezing, then shipped to Gilead’s facilities in California, before being returned to Europe for testing, then imported back into the UK where they would be given to patients.

At present, all the regulatory approvals to do this are in place, as the UK is part of the EU. The problem arose because genetically modified cells are considered medicines and, in the run up what looked likely to be a disorderly Brexit on March 30, needed approval to be imported from Europe. No-one knew, or knows what the new rules will be.

“The companies [looked set to decide that] that the risk of being unable to ship the cells back to the UK is too great and [were considering] calling off the UK arm of the study as a result,” said Prof John Gribben, a leading cancer specialist and head of the Centre for Haemeto-Oncology at Barts Hospital in London. “They didn’t want patients to be halfway through the treatment and then for us all to be stuck with not being able to get the cells back.”

It is understood that the MHRA, the UK regulatory authority, responded by writing to the UK industry as a whole, granting a six month grace period for companies involved in such cross-border trials. The previous rules would apply during that period, whatever the political outcomes.

Meanwhile approval from Dutch regulators was still required, and this took more time

Dozens more trials at risk

In the end, Kite received all the necessary assurances and wrote again to doctors in mid-March saying it would be proceeding with the trial after all.

The consequences of a decision not to proceed would have been extremely serious, for two reasons, scientists say. First, the patients are gravely ill and not responding to conventional treatments so are unlikely to survive until such time as the rules are clarified.

Second, there are dozens of trials involving genetic manipulation aimed at many different diseases. They are typically international in scope, with patients drawn from many different countries and drawing on the resources and expertise of biotech companies and clinicians around the world.

Despite the good news about Zuma 7, experts now fear that Brexit threatens the UK’s ability to participate in other cross-border cutting-edge trials.

“Collaboration plays an important role in cancer research, advancing scientific progress to help us understand disease and develop better treatments for cancer patients, comments Shaun Walsh, Head of Public Affairs and Campaigning at Cancer Research UK.

“Scientists from the UK and EU have a greater impact when working together – benefiting patients across the EU and beyond.”

Mr Walsh added that, whatever the outcome of Brexit, it was important to ensure that cancer scientists retained the ability to work across borders.

“The UK and EU should come to an agreement that supports researcher mobility and protects collaboration in cross-border clinical trials.”

Brexit is already having an impact on the flow of highly skilled experts into the UK.

Half of PhD students funded by Cancer Research and 76% of postdoctoral scientists at their institutes come from outside of the UK. There have been  declining proportions of EU applicants at some of their institutes since the EU referendum result. In 2016, 28% of post-doc applicants at CRUK’s Glasgow-based Beatson Institute, a leading cancer research centre, were from the EU, falling to 13% of applicants in 2018.

In addition, some oncologists now report a growing shortage of key drugs, which may be the result of stockpiling pre-Brexit.”We are having to stockpile certain cancer drugs and indeed some clinical trials may not able to continue as we have not stockpiled the relevant drugs,” one said.

For more details on how Car-T works, follow this link to see an infographic : CAR T How it works_



The prisoner in the bed next door

The guy was in a worse situation than me

Even in my feverish and befuddled state, I could work out that the guy in the adjacent bed was in a worse situation than me.

It was night two or three of my stay in hospital, I can’t remember exactly. I was in to sort out my pneumonia, which was a by-product of the cancer I was diagnosed with many years before.

I was on the heart ward, as there were no beds in oncology, my home from home. I would get there after three nights of being shunted around the hospital. All around, pallid and unhealthy looking men came and went from their operations.

My neighbor was chained to the bed and attached to two police guards. He was a good-looking chap, dark-haired and well-spoken from what I could hear through the curtain that separated us.

One guard was an ageing bruiser with grey hair and a stocky frame, ready I assumed to wrestle down any escaping convict with maximum force. The other was a delicate-looking woman in her thirties.

They announced their arrival with a clattering of unwinding chains, like a boat being launched off a ramp, then further noise as they fastened him to the bed and each other. It was as though Magwitch, the convict from Dickens’s Great Expectations, had clanked and clattered his way into hospital.

“I’m not going to run, I’ve got too much to lose,” the prisoner said, his manner charming, even cajoling. He spent a lot of time talking about his loyal girlfriend on the outside.

“This bed is total luxury,” he said of the skimpy hospital mattress. “It’s so much better than prison. I mustn’t get used it, take me back as quickly as you can.”

Whatever he had done, it seemed unlikely that he had murdered anyone. Drugs, I speculated, maybe coke that that ruined his heart. I listened, fascinated, to him explain how drugs were shipped in with drones, how it was widely assumed the prison governor was on the take, how the jail was filling up with “stabbers” – teenage murderers from the London suburbs, killing their own kind.

I drifted off, and when I woke, he, his guards and his chains had gone.

I did see the prisoner once more before I was moved on. It was after his surgery and he was spread-eagled on the bed, unconscious, a big bandage on his chest. His guards were still next to the bed, but they had released the chains.

He had at last found freedom of sorts.

The surprising upside of the cancer experience

Reflecting on the unexpectedly positive aspects of the direct and and indirect experience of cancer

You must think I am deranged to even think about writing an article about the positive aspects of going through cancer.

After all, this is a hideous disease which plunges your life into uncertainty and can often only be tackled with life-changing surgical and chemotherapeutic intervention, inflicting long-term psychological and emotional damage on those lucky enough to survive.

However, it is a peculiar fact that people do often derive some positives from the experience of cancer.

To cite American writer William Finnegan, “a lot of cancer patients and survivors report that they never really lived until till they got cancer, that it forced them to face things, to experience things more intensely”.

Or, as my therapist puts it, “cancer takes away – but it also gives.”

Talking to survivors, as well as drawing on my own experience, cancer does bring about a heightened appreciation of life and living. Even as you fear that it will all slip away from you, you are conscious of the value and meaning and beauty of life, to a degree that is far removed from humdrum everyday existence.

Seeing the world in technicolour

A friend explained this to me on a walk round Wimbledon Common: before she had cancer, she saw everything in drab blacks and whites and grays. Once the cancer struck, everything became more brightly coloured – and stayed that way for a long time until the cancer was a long way behind her.

By that time, she had completely changed her life – divorced, changed jobs and had a completely new circle of friends from the time B.C. – before cancer.

Another friend went through lung cancer. She is a journalist, used to casting a critical eye on people in authority.

She remembers driving home from the doctor’s appointment when she was first given the diagnosis, feeling sick with worry. “I felt that I was lugging home a horrible wound and I’d have to tell my kids and husband – I was a bearer of bad news to people who are perfectly healthy and I felt such a failure.”

After her family rallied round, and she had processed initial shock, she was overwhelmed by the kindness of those around her: the GP who took the trouble to call her up after the diagnosis, the nurse who held her hand, the surgeon’s incredible empathy.

“I knew it was a bad sign when on the morning of the operation, the surgeon sat on my bed.

“’I know you are frightened,’ he said, ‘but honestly, I do this every day of the week. You will feel beaten up and bruised but you will be fine.”

Depression can be worse than cancer

She was indeed fine, except that the tamoxifen she was prescribed led to terrible side-effects of depression and anxiety. She even considered suicide, before she came off the drug and got better.

“If anyone asked, would you have depression again, or cancer, I’d have cancer every time.”


The cancer experience set her off on a personal journey of discovery as she re-evaluated everything about her life. She was in her fifties when the disease struck, and a very successful Fleet Street journalist, but suddenly none of the trappings of a successful career seemed to matter at all, compared to friends, family and meaningful work

“I look back now to where I was before cancer and I really think I didn’t know anything,” she says now. “I was a little girl thinking that a big by-line on an article was a big deal but measuring my life by by-line and achievement was all very ephemeral.”

She says now that she would not chose to go back to her pre-cancer self, an astonishing statement that shows how powerful the disease can be me in motivating personal change.

Of course, you may come to realise that your family is the most important thing in your life, but the strains caused by the disease may break up the family. Or you may lack the means to transform your life, and you have to go back to the dreary day job with a renewed sense of its total pointlessness

To take one more example: a woman whose husband went through a bone marrow transplant, and who was therefore at risk for a long time, was overcome by the kindness of the neighbours in the American suburb where they lived. Friends flocked by, leaving meals, ferrying kids to school, helping her to make the punishing hospital vigil.

Understanding the meaning of love

She is a committed Christian, but until this episode, she now recalls, love was a kind of abstraction. The kindness of her neighbours and acquaintances have given her a powerful and practical understanding of love as a force for good in her daily life.

We need not share her religious conviction, to know something of that she means. I think British people are not so demonstrative as Americans under such circumstances, but still, to the extent that friends and acquaintances rally round: that is a positive experience.

I was very touched, for example, to hear that some complete strangers at the local church, which I’d attended the sum total of once for Midnight Mass or similar, were praying for my recovery.

Let’s not get carried away: cancer is not exactly something you would wish upon yourself or your loved ones. But seeing life in technicolour for a while, and getting to re-evaluate what’s important and what is trivial, does offer some consolation.

Readers will have noticed that all the case studies are of women. If there are men out there who would like to talk about their feelings about cancer, please get in touch.









How and why the UK falls behind in cancer care

An interview with Prof Karol Sikora

The National Health Service is a magnificent institution, and we can all be proud (and thankful) as it celebrates its 70th birthday this month.

But for all its tremendous qualities, the NHS has not delivered world class cancer care, as evidenced by statistics that show the UK still lags a long way behind the best in Europe.

We are well down the league tables for common cancers…

We are number 14 in breast cancer, 16th in bowel cancer, and 17th for prostate cancer – and five year survival rates for pancreatic cancer are at half the rate of the US. One year survival rates are even worse.

The UK is among to performers for certain rare cancers, for example childhood leukaemia showing that once a patient is on the treatment pathway, the standard of care can be excellent. Weird and unusual cancers, or those affecting children, are more likely to be picked up quickly, hence the system kicks in earlier.

…and 10,000 deaths a year could be prevented if we caught up

But still, it’s thought that up to 10,000 deaths a year could be prevented if we simply caught up with the European average, according to the recent study of 37.5 million patients carried out by the Lancet medical journal. (

To explain what is going on, we turn to Prof Karol Sikora, a 40 year veteran oncologist and campaigner for better universal health care. A man with a string of letters after his name, indicating a career at the cutting edge of science and cancer treatment, Karol is not afraid of controversy.Karol Pic

He has been known to describe the NHS as “the last bastion of communism,” and when he waded in on this issue at the turn of the century, he was on the receiving end of furious denunciations from the medical establishment.

Sikora is still outspoken, arguing that the English Cancer Strategy (designed to overhaul NHS provision of cancer care by 2020) does not go far enough, and that two month targets for treating people are far too long.

“That should be one month, not two,” Karol says. “In America [if you were lucky enough to have health insurance] you would sue if you were told you’d have to wait that long.”

Patients have difficult accessing specialist and diagnostic services

Asked why we still do so badly by international standards, he explains that most patients have difficulty accessing specialist and diagnostic services.

This is a clear conclusion to be drawn from one year survival rates. Most people who have cancer do not die in the first year of the disease, so by definition, English people take longer on average to be diagnosed and treated, and are more like to pitch up at A&E presenting with emergency symptoms, by which time it may be too late.

Prof Sikora points to three main reasons for the delays in getting people diagnosed and treated.

First, English people are more stoic than Italians or French. It seems we are culturally disposed not to make a fuss or complain, so it takes longer to come forward and tell our GP about symptoms.

And that’s the second point – unlike other countries, we have to see a GP before we can get a scan. The GP is gatekeeper to the services of the NHS and, with the best will in the world, is not necessarily going to recognise early cancer symptoms.

Karol gives the example of someone going in with back pain. Chances are, it is not cancer, so the patient is likely to be referred to a physiotherapist, and it may be months before you are sent off to get a scan or X-ray. Likewise, you might have a distended stomach, and be sent off round the houses for months before you get properly investigated for cancer.

Brits are too stoical, and the NHS is overloaded

The third point is that hospitals are working at capacity. They are overloaded and there is little scope for them to carry out the triage that will sort out the sore tummy from stomach cancer.

The national cancer strategy is trying to promote that kind of approach for bowel and other common cancers. It already works very well for breast cancer screening, for example, where a woman comes into a congenial clinic, gets a scan and the results an hour or two later, and is told by the end of the day what if any follow up treatment is required, and when.

The introduction of such screening programs in the 1980s is one factor behind the significant improvement in survival rates for this kind of disease.

The problem according to Sikora is that plans for reform are just not disruptive enough. “The [national cancer strategy] uses the same facilities such as big, busy hospitals to try to create a new ethos in early detection. We have the lowest number of scanners per million people across Europe so all that will happen are huge log jams. What’s needed are new off hospital facilities in retail parks and leisure areas without a doctor in sight. What the point everybody schlepping into Euston to get to a centre at UCHL? The centres need to be where the people live?”

Karol is clear that, at bottom, the reason the UK falls behind in cancer care, is because less money is spent on healthcare than in other European countries – still the case despite the increased funds for the NHS.

Unfortunately, unless things change drastically, we are set be the poor man of Europe in the cancer survival tables, for some time to come.

In a decade or so, there may well be new diagnostic tests that would reveal whether you had a disposition to cancer by taking a pinprick of blood (such as those available in doctors’ surgeries to test for diabetes).

In the meantime, the best thing to do if you suspect you have cancer is – throw aside your native stoicism and make a big fuss, sooner rather than later.

Treating the whole person, not just the disease

Last month, I interviewed Dr. Hilary Mitchell about her own experience of cancer – made all the more traumatic in that the disease was found in her tonsils, a part of the anatomy she is intimately familiar with through her work as an oral surgeon.

She was treated in the same West Country hospital where she has worked for more than twenty years, by doctors and nurses who have long been colleagues and in some cases friends.

She is full of praise for the medical staff who treated her, whom she describes as extremely caring and efficient, especially during the dark days when she was on the receiving end of a brutal combination of chemo and radiotherapy.


However, during her six months recovery time, she has had time to reflect on what could have gone better. She has four specific recommendations, which seem very relevant for all of us caught up in the experience of cancer.

Patients need to be invested in their treatment

The first is that patients need to be invested in their treatment. By this, she means being part of the decision-making process, and thus feeling in some way responsible for the outcome, good or bad. The treatment choices, with all their risks and benefits, should be presented and discussed with the patient.

By contrast, she was presented with a fait accompli – in effect told: “this is what we think you need, suck it up”.

It is often the case that a more aggressive treatment option delivers a better long-term outlook – but that might be at the price of unpleasant side-effects. Sometimes the calculus is not complicated at all, in that alternative treatments confer no real benefits when weighted up against the risk of relapse. But having the options set out, even for them to be dismissed out of hand, does mean the patient feels involved in the decision.

“When you come to reflect on the eventual outcome, you know you paid a price, but you had that discussion you knew there were risks and that the alternatives may have been worse still.”

Explain side effects in advance

The second point, is that no-one took the trouble to explain to her the probable side effects, beyond the immediate unpleasantness of the treatment.

“I wasn’t given accurate percentages of risks, I wasn’t given any advice about how the treatment and effects might impact on my job or my life in the medium and long term…and this despite being a colleague and feeling that I was treated incredibly well at the time.”

She went home after treatment and was struck by numerous side effects, some expected and some unexpected. These ranged from severe dry mouth (which is permanent and life-changing) to some deafness for which she will need hearing aids, feeling intensely cold and recurrent oral thrush (eight episodes and counting).

“Oh no, have I got this as well,” she said to herself. “I began to feel a real sense of resentment that no one had explained to me the likelihood of all this happening. I had to ask about so many things that my colleagues eventually acknowledged were a problem.”

When she checked the information in scientific articles, she discovered that some deafness and tinnitus, for example, are known to be quite common. Many of her side effects could have been anticipated, and treatment given more promptly, had she known what to look out for.

The communication deficit was especially acute in the weeks after she finished treatment, when the side effects caught up with her.

“As a patient, you’re probably getting better,” she says ruefully. “But as a human being, you’re falling to bits. ”

Many people are struck by depression when the acute phase of the disease gives way to the recognition that even if you are cured, your life has changed forever.

Offer counselling support

This is the third lesson: counselling support should be offered as a matter of course. This will help patients come to terms with the new sense of emotional vulnerability, as well as dealing with practical questions about going back to work, claiming insurance and so forth.

In well-funded private practice, that support may be available – but what is on offer from the NHS is often perfunctory.

As a doctor working within the NHS, Hilary is well placed to understand that hospitals are operating at capacity and resources are starved. But still, “I can’t understand how leaving patients to work things out for themselves or only ask when symptoms have progressed, is helpful and cost effective in the long term.”

Ask patients for feedback

The fourth lesson is that cancer teams should ask patients about their experience: what went right, and what did not go so well? The answers could feed back to improve the treatment for other patients.

It’s not just Oral Surgeons who struggle with the lack of humanity encountered at times in the Cancer pathway, it’s all patients. It is surprising that Oncologists and Cancer Surgeons don’t want to know what keeps their patients awake at night with worry, or what is the one thing they would tell another patient at the start of their journey.

Hilary is doing her bit to improve communications by writing a leaflet on post-treatment information for head and neck cancer patients, and she has the humility to recognise that she will have a good deal more understanding and empathy for her own patients when she returns to work.

Follow her four recommendations, and we will see Cancer Teams move from excellent treatment of Cancer itself, towards excellent treatment of the Cancer Patient as a whole.

When a clinician gets cancer

An oral surgeon reflects on her own experience of cancer

It began last August when Hilary Mitchell felt a small lump in her neck. She told herself to ignore it, but when it was still there a few days later, she thought she better get it looked at.

Dr. Mitchell is an Oral Surgeon at Musgrove Park hospital in Taunton, so she was booking an appointment with colleagues  in the Maxillofacial department where she had worked for 20 years.

Hilary’s subsequent experience as clinician-turned-patient is highly instructive for all of us, on both sides of the clinic door, and she has bravely agreed to share her story here.

Hilary Picture

Of course, doctors get cancer like other people. But it is exceedingly rare for a specialist to be struck by cancer in precisely the part of the body that their department deals with on a daily basis.

“To have cancer of the head and neck seemed to me to be completely ridiculous,” she reflects as she is coming to the end of six months recuperation and prepares to go back to work this summer.

At first, she thought the swelling might be caused by a tooth infection, but a colleague (and friend) arranged an investigation to put her mind at rest.

Another colleague did the investigation and it was when he went very quiet she realised the serious nature of the lump. He said little, but told her to come back the next day for a more detailed procedure.

She remembered her training back in the 1990s when cancer of the mouth, tongue and throat led to extensive and disfiguring surgery with a very poor long term outcome. She also recalled assisting at long neck dissection surgery to remove lymph nodes in the neck; an operation she might now be facing.

“If I ever get anything like that,” she had told herself when a trainee, “I’m going to top myself.”

Hilary knew all the likely scenarios from years of clinical experience

It was a stunning realization that she had probably got this excruciatingly nasty form of cancer. While most of us would scare ourselves silly by looking up dreadful diseases on the Internet, Hilary knew all the likely scenarios from years of clinical experience.

“I was completely wide awake for two nights in a row,” she recalls.

There followed a PET scan and then tonsillectomy and biopsies of tongue and throat. The nurses she’d worked with for years were traumatized as Hilary came to the hospital for these tests, not as a senior clinician but as a vulnerable human being, a terrified but unusually well informed patient.

Eventually she was diagnosed with squamous cell carcinoma of the tonsil caused by the Human Papilloma Virus (HPV), an increasingly prevalent form of cancer. It had started in her tonsils and spread to the lymph nodes in her neck.

Unlike the Head & Neck cancers she’d seen during her training, the outlook for HPV tonsil cancer is good, although still serious. It would require an intensive course of chemotherapy and radiotherapy.

Like the proverbial rabbit in the headlights

Like anyone finding herself in this position, Hilary felt like the proverbial rabbit in the headlights. She sat there stunned as she listened to what she was told by the team of oncologists and surgeons.

The Chemoradiotherapy was carried out with great efficiency and compassion with excellent support from a fantastic team. On the downside she has suffered hearing loss and tinnitus, recurrent oral thrush and lymphoedema – a persistent swelling under the chin. Since her saliva glands were zapped by the radiotherapy, she has a permanently dry mouth which has lead to problems with speaking, eating and sleeping.

And, the least of her worries perhaps, wine now tastes disgusting, whether red or white, vintage or plonk.

As she recovers and prepares to go back to work, there are a number of lessons Hilary draws from her experience. These will be the subject of a forthcoming article.