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INSIDE HEALTH 鈥� Programme 6.

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TX:听 12.02.19听 2100鈥�2130

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PRESENTER:听 MARK PORTER

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PRODUCER:听 PAMELA RUTHERFORD

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Porter

Hello. 听Coming up today:听 Re-defining cancer 鈥� the idea that you can detect too many cancers may seem counter-intuitive, but over diagnosis is worrying many doctors, as well as potentially harming a lot of patients. 听Is it time we stopped using the term cancer to describe low risk tumours?

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And iron 鈥� an essential mineral, but a very toxic one if levels in the body rise too high, as they do in people with haemochromatosis.

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Clip

It is in many ways described as the most common condition you have never heard of.

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Porter

More on identifying haemochromatosis later.听 But first, a novel approach to treating migraine.

Transcranial magnetic stimulation, or TMS, has been approved by NICE and is being pioneered in the NHS by the Headache Centre at Guy鈥檚 and St Thomas鈥� hospital in London and it鈥檚 offering it to people who have failed to get relief from more conventional treatments 鈥� ranging from fast relieving drugs like sumatriptan, to daily preventive medicine, and even Botox injections.

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Barry Simner started getting severe migraines in his fifties.

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Simner

They went from really sort of a very bad headache type hangover type headache to really sharp pains in my head so that you wanted to really close both eyes and hold your head.听 But then as time went on the severity of them became extreme, particularly in my right eye where it was almost like some sharp object was being pushed into my eye and I just couldn鈥檛 cope with it.听 Eventually, they went to the stage that I was getting anything up to five to six times a week and the attacks lasted then for four to six hours, dependent upon the time of day when they happened.

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Porter

It was wiping out a large part of your week.

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Simner

Totally.听 They were so debilitating then that you couldn鈥檛 watch television, I certainly couldn鈥檛 read a book.听 The pain was so intense in my right eye and then spreading to my other eye that you just couldn鈥檛 make plans.听 So, it got to the fact that I stopped volunteering, I certainly stopped meeting up with friends and particularly with having young grandchildren it affects your life totally.

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Porter

So, what sort of treatments did you try?

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Simner

When I first started, they put me on very triptans, I went through a whole gambit of those.听 I moved on to Botox and for probably six to nine months I was fine, I was okay and then they came back again.

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Porter

And all of the treatments that you鈥檝e had, including the Botox, essentially, they weren鈥檛 really working?

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Simner

No, not at all.听 You might get some relief for a very short time but you knew darn well that it was going to come back again.

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Porter

Barry is now under the care of Guy鈥檚 and St Thomas鈥� where a new hand-held version of TMS is being offered to patients like him.

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Dr Anna Andreou is Director of Headache Research.

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Andreou

TMS has been in the neurology clinics for many, many years, it was discovered over 30 years ago in Sheffield actually.听 However, what it involves is big heavy machinery sitting in a corner in a clinical lab and any patient who needs to receive a treatment with TMS has to travel to the hospital, get the treatment and then go home.

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Porter

And of course, the advantage of having a portable device is that the patient has it with them, when they need it and it鈥檚 in their home.

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Andreou

That鈥檚 correct.听 I mean when we talk about a disorder like migraine, first of all, it鈥檚 an episodic disorder, so when you have a migraine attack you need to treat it as soon as possible, so you can鈥檛 really afford coming to the hospital to receive a treatment.听 At the same time when you want to use it as a preventive treatment you have to use it on a daily basis, so you need to have it available with you the whole time.

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Porter

We鈥檝e got one of the devices on the desk next to you here.听 Describe it for our listeners.

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Andreou

So, it鈥檚 a very slim device, it looks like a small radio, it has a bit of a curve so the patients can place it at the back of their head and it feels comfortable when they do it.听 And it鈥檚 very simple, it has just three buttons on it, one button is for charging and the other buttons are for delivering the pulse.听

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Porter

And when you say pulse, what is this device actually delivering to the patient?

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Andreou

So, it delivers a magnetic pulse that transforms into a small electrical current at the outer part of the cortex and this is done through electromagnetic conduction.听

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Porter

So, it鈥檚 having an effect on brain electrical activity?

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Andreou

That鈥檚 correct.听 So, it will only influence the very outer part of the brain and essentially what it does it modulates what we call the occipital cortex, which we know is hyperactive in migraine.听

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Porter

So, this is the outer covering of the brain at the back, effectively?

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Andreou

That鈥檚 correct.听 And essentially it acts in two ways.听 First of all, to stop the attack by modulating the outer part of the brain, the cortex, this communicates with one of the pain centres deep in the brain and so by modulating one side indirectly you can suppress the pain centre.听 On the preventive side, what we have shown is that over a prolonged period of time it actually suppresses this hyperactive cortical activity and it modulates the pain centres, not just only deeply but also the pain centres involved in triggering a migraine attack.

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Hill

I鈥檓 Bethany Hill, I鈥檓 a clinical nurse specialist at the Headache Centre at Guy鈥檚 and Thomas鈥� Hospital.

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Porter

So, to use it, what actually happens?听 Can you run 鈥� I鈥檒l tell you what, can I try it on myself and then we鈥檒l see what it鈥檚 like?

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So, the first thing is I pick it up, ooh yes, it鈥檚 definitely got magnets in it鈥�

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Hill

It鈥檚 definitely got magnets in it.

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Porter

鈥�because it is heavy.听 So, what am I doing, how do I do it?

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Hill

So, initially you just press the middle button right in the middle and slowly 鈥� it takes about a minute to load a pulse, as we said it鈥檚 a single pulse, so every time you want to deliver a pulse you need to load it.

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Porter

So, if I was having a migraine and wanted to treat it would that be with one pulse or鈥�?

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Hill

So, we recommend doing two pulses every 15 minutes up to an hour or two.听 And so, we do normally two consecutive pulses.听 So, that beep there is telling you that the pulse is now ready and so now you need to get into position.听 Slightly higher, so not on the neck, in line with that kind of skull line that you鈥檝e got the ridge at the bottom.听 And then press one of the buttons.

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Porter

Ooh.

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Hill

Did you feel anything?

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Porter

Yeah, I just felt like something was tapping on my skull slightly.

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Hill

Yeah exactly.听 What we say is the preventive treatment is the important treatment, getting regular 鈥� just as you would with a medication 鈥� taking it a similar time of day, every day and building up that regime into their natural lives.听 And so, dependent on lifestyle that maybe once a day, twice a day, three times a day.听 Like Barry can do it three times a day because he鈥檚 a retired pharmacist and 鈥� but other patients who are working they only do it once a day.

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Porter

Is there a chance that people could be cured by this?听 So, that if they get their migraines under control and you withdraw the treatment for some reason those migraines don鈥檛 come back.听 Have we seen that happen or have we not been using it long enough yet?

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Hill

So, we rarely talk about curing migraine because we know that the biology unfortunately sits there ready to be awakened again.听 So, even patients who have amazing responses which get much better, it is trial and error, sometimes people can have long periods of time without migraine but there鈥檚 always the risk that it will come back.

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Porter

What鈥檚 the reaction to patients when they first 鈥� it鈥檚 quite an unusual thing?

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Hill

Well yes and I love Barry because obviously his own experience in life, he said to me I was deeply cynical, that鈥檚 who I am, you know he said I didn鈥檛 think it was going to work.听 And the initial response he really thought was going to be placebo.听 And as time has gone on, he鈥檚 gone wow, this really does work.听 And patients report that, you know, there are many stories of patients where it鈥檚 really changed their lives.

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Andreou

We have shown in our clinic that the device can be effective in about 65-70% of the patients.听 It鈥檚 effective in reducing the frequency of the attacks but mostly the intensity of the attacks.听 And what we鈥檝e found in our studies is that actually it helps a lot with the impact the migraines have on our patients鈥� lives, so the quality of life is much improved with this treatment.

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Simner

And over a period of weeks the migraines, first of all, the severity, then the frequency, began to diminish.听 It鈥檚 made a dramatic effect, I鈥檝e started to get both my social life back and my volunteer life back.

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Porter

Looking at the last couple of months how many have you had?

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Simner

In the last couple of months, I鈥檝e probably had no more than two a month, generally speaking about one a month.

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Porter

And that you鈥檙e quite happy with?

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Simner

That I鈥檓 very, very happy with compared to five to six a week.

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Porter

Barry Simner talking to me at the Headache Centre at Guy鈥檚 and St Thomas鈥�. 听And there is more information on TMS on the Inside Health page of the Radio 4 website.

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Iron is good for us, it is essential for numerous metabolic pathways, not least the transportation and utilisation of oxygen but too much iron can be toxic. 听In practice it鈥檚 hard to overdose on dietary iron as we have inbuilt safety mechanisms that control how much we store, but around one in 200 of us has a genetic glitch that can lead to dangerous iron overload. 听A condition called haemochromatosis which, if missed, can lead to problems ranging from fatigue to liver failure. 听And it鈥檚 often missed.

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Ted Fitzsimons is Consultant Haematologist at Gartnavel Hospital in Glasgow.

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Fitzsimons

Well haemochromatosis is a condition that results from the excessive absorption of iron from the diet.听 And we require iron predominantly for the production of blood, for the production of our red cells.听 But when we absorb too much iron then iron gets deposited in tissues, it gets deposited in our liver, in our pancreas, in our joints and iron overload, iron toxicity, in these organs can cause serious problems.听 It can cause liver disease 鈥� cirrhosis 鈥� not only can it cause cirrhosis but the cirrhosis can then go on to cause liver cancer.听 Diabetes, arthritis 鈥� a multitude of problems.听 The vast majority of patients who are genetically predisposed to haemochromatosis are not diagnosed, they don鈥檛 know about it.听 And it is, in many ways, described as the most common condition you have never heard of.听

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One in eight of our UK population of North European or Celtic extraction are carriers for this condition and about one in 200 of us are genetically predisposed to develop the full-blown condition.

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Porter

Carriers with one abnormal gene are normally unaffected, but people with two abnormal copies are at risk. 听Most people with two faulty genes still don鈥檛 necessarily become ill, but new research suggests we have underestimated the odds and that the proportion who do is way higher than previously thought.听

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Professor David Melzer from University of Exeter led the new research which analysed data on hundreds of thousands of people in the UK biobank.

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Melzer

Well, it was thought that less than 1% go on to have problems but what we鈥檝e shown is that in men they鈥檙e 20 times more likely to get disease as a result of this faulty gene and in women 10 times more likely, if they鈥檝e got the double faulty gene.听 So, we found that 1.6% of all the men with hip replacements in our study actually had the double mutation.听 And 5.8% of all the people with liver cancers.听 So, it is causing a lot of disease.

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Porter

I mean 10-20 times more likely than we thought, that鈥檚 quite a change, that鈥檚 shocking.

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Melzer

Absolutely, and that sounds quite frightening in a way but also there鈥檚 a silver lining in that it鈥檚 very easy to test for and very easy to treat.听 So, it鈥檚 the rarest of all genetic diseases, it鈥檚 easy to treat and it would be wonderful if doctors started testing for it routinely.

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Porter

But to make the diagnosis you have to ask for the right test and a good place to start is a blood sample to check levels of an iron-carrying protein called ferritin. 听听However, to order it, you need to be thinking of haemochromatosis in the first place and it is easily confused with other conditions.

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Ted Fitzsimons.

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Fitzsimons

Haemochromatosis is difficult to diagnose and that鈥檚 particularly so because the symptoms develop in such an insidious fashion.听 Iron accumulation occurs over 10, 15, 20 years, so the symptoms are often subtle and gradual and the symptoms themselves are common symptoms 鈥� sore joints, fatigue, some degree of weakness, a bit of liver upset.听 This can occur for a multitude of other reasons, apart from haemochromatosis.听 And there鈥檚 no one symptom that stands out as 鈥� oh, I must check this person for haemochromatosis.听 So, it is a difficult diagnosis to make.听 But, you know, for a country that has such a high incidence of people who are genetically predisposed to haemochromatosis, we really need to be world leaders in improving the diagnosis and improving and standardising the treatment for patients once they are diagnosed.

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Porter

Ted, can I just ask you?听 I mean as a GP, myself, what does the latest guidance say we should be doing?听 If we suspect this, what is the simplest way we can look for it, to start with?

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Fitzsimons

Well, there鈥檚 a simple test to measure the level of iron in the blood and if the level of iron in the blood is raised then that鈥檚 a good indication to screen the patient for the gene abnormality of haemochromatosis.

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Porter

Ted, do we know how long the average person might wait for a diagnosis of haemochromatosis?听 I mean what sort of delays are we talking about?

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Fitzsimons

I think the average age for diagnosing haemochromatosis is in the 50s.听 So, the delay could be in the order of 20, 30 years.

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Porter

Jenny Lees only found out she had haemochromatosis in her early 60s after her son was diagnosed with the condition when he became very ill.听 听She was advised to be tested too. 听Up until then she blamed work for her debilitating exhaustion.

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Lees

I felt extremely tired, to the point where I sometimes used to say I feel ill, I feel so tired.听 But I put it down to 鈥� I worked in Bristol, I travel by train every day, I had nine staff, so put it down to just generally doing too much work really.听

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Porter

And what had happened to your son?

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Lees

My son became diabetic and within a few months had become insulin dependent and that鈥檚 when they found the haemochromatosis.听

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Porter

And presumably neither you nor him had ever heard of this condition before?

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Lees

No, not at all.听

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Porter

And how old was your son at this time?

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Lees

When he first started with the problem, he was 38.听 He died at 42.听 His liver was hugely compromised and he then picked up one of the hepatitis and they were unable to give him the drugs that he needed because his liver was then so very badly cirrhosed.

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Porter

Jenny鈥檚 son鈥檚 story is extreme 鈥� deaths in middle age are unusual 鈥� but it highlights just how serious haemochromatosis can be if it鈥檚 missed.听 And the story is all the more tragic as the condition is very treatable.

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Fitzsimons

When patients present, we start by taking a pint of blood off them every week and we continue doing that until the iron levels are satisfactory or normal.听 And then the patient goes into a maintenance phase where we venesect them, we take a pint of blood off less frequently but often enough perhaps every three months to keep the iron levels under control.

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Porter

And by reducing their iron can we reverse much of the damage that鈥檚 been done?

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Fitzsimons

Oh, we can reverse virtually all of the damage that鈥檚 done.听 We cannot reverse cirrhosis, if cirrhosis of the liver is established then that doesn鈥檛 reverse but we can reverse a lot of liver damage with simple venesection.听 Unfortunately, the arthritis that our patients get and it鈥檚 interesting from Professor Meltzer鈥檚 study that incidence of arthritis and bone problems is really high, really much higher than we鈥檇 thought, in our haemochromatosis population.听 Unfortunately, the arthritis, once it has developed, does not improve with venesection.听 So, we certainly want to diagnose it before arthritis is established.

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Porter

Ted, if there鈥檚 one thing that you鈥檇 like to change, so that we improve the care of people with haemochromatosis what would that be?

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Fitzsimons

Well I would quite like UK laboratories that find patients with high serum ferritins and if that patient is of North European extraction that that sample would automatically be tested for the iron level in the blood.听 And if the ferritin is high and the iron is high then the patient should be screened for haemochromatosis.

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Porter

Ted Fitzsimons.

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And just to be clear, your GP can check your ferritin levels as an indicator of trouble, but a high reading isn鈥檛 just caused by iron overload. 听To confirm exactly what is going on, more tests 鈥� iron levels and genetic analysis 鈥� will be required. 听Details on the website.听 Where you can also subscribe to our weekly podcast and find out how to get in touch.

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Karen from Rochdale emailed following our item on stomas.

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Karen (read)

I was listening to the radio in my bathroom, getting ready for bed, when hey, an article on stomas. 听The interviewee鈥檚 comments resonated with me fully. 听Great to hear a factual straight forward article.听 听And thank you for referring to having stomas, not the usual 鈥渇itted with a bag鈥�.

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I had totally resisted the surgery but, like your interviewee, none of the medicines controlled my colitis. 听The day I woke up after surgery was the start of my healthy life.听 Nearly seven years on, in my 55th year, I鈥檝e never felt healthier, even compared to my pre-colitis days.听听 I am not limited in any activities.

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Porter

Sheila e-mailed to say thank you. 听Ever since listening to our blood pressure special 鈥� which included advice on how to measure blood pressure properly 鈥� her readings dropped around 10%. 听How did you do it, she asks?

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That would be telling Sheila.

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And, finally, Margaret McCartney鈥檚 painful heel from running due to plantar fasciitis prompted Thelma to get in touch to ask why we only talked about stretches, there was no mention of rollers.

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Thelma (read)

I鈥檓 not a runner, but have had a couple of episodes of plantar fasciitis such that putting my foot to the ground was incredibly painful, like walking on a sharp stone.听 A friend of mine who鈥檇 had similar problems loaned me a foot roller.听 After a few days, the pain had completely gone.

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Porter

Well Thelma, our guest, physio Roger Kerry, didn鈥檛 mention rollers as there is no good evidence to support their use despite your experience. 听Just because they are ubiquitous, does not mean they are effective.听 Indeed, there is some evidence that they can be harmful in some situations. 听We are going to take a closer look and report back.

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Do get in touch with your comments or ideas for subjects you think we should look into. 听You can email insidehealth@bbc.co.uk or tweet me @drmarkporter

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I am afraid it鈥檚 cancer. 听The words no one wants to hear, or utter, but as technology improves, are doctors now over-using the term cancer to describe changes that might never have come to light in the past and which are unlikely to threaten anyone鈥檚 health.

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Cancer is an umbrella term that encompasses a huge spectrum of disease. 听From the non-threatening, like some forms of breast, thyroid and prostate cancer, that have a less than 5% chance of progressing over 20 years, to the very threatening, like most lung cancers, that grow and spread rapidly. 听So, is it right to lump them all together under the same label?

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Dr Murali Varma, a consultant histopathologist at University Hospital of Wales in Cardiff, thinks not.

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Varma

The point that I want to make here is that what we are calling cancer today is essentially a different disease from what we鈥檙e used to because in the past they were all symptomatic diseases, so these were patients who presented with symptoms, who had life-threatening disease.听 Today, a lot of them are incidental which we go round searching for and a lot of them are harmless.

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Porter

And by finding them what you mean is that these have been screened for or maybe just being picked up on scans or tests that we鈥檙e doing for other reasons?

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Varma

Correct because at present we do a lot more investigations than we used to.听 I think we have three situations here.听 In the old days when I was young patients presented with symptoms and these were usually symptoms not of the cancer but of the metastasis, so they presented with weight loss, with fractures.听 And that was usually an indication of life-threatening disease.听 Later, with increasing awareness, it became a case of these were lumps that they were detecting but they were coming with tumours or lumps that they had identified.听 Today, where patients who go into hospital for any reason get a variety of investigations, either ultrasound, CT scans, you name it, so we end up picking up abnormalities where they had no symptoms whatsoever.听 Some of these tumours were destined to progress, while others were never destined to progress in that patient鈥檚 lifetime.

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Porter

So, what would you propose that we change that would improve the situation for patients?

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Varma

Yeah, I think there鈥檚 two things here.听 One, I think it鈥檚 education, we still have this idea of cancer as a different disease when actually benign and cancer are a continuum.听 So, we鈥檝e got to think about cancer like we would think about infection.听 So, if I tell somebody that you鈥檝e got an infection, they don鈥檛 get terrified.听 But if I say that you鈥檝e got cancer, they get terrified.听 But a lung infection might be just a bronchitis or a severe pneumonia, which means antibiotics or it could be something like an Ebola virus or something absolutely fatal.听 So, you鈥檝e got this whole biological spectrum of infection.听 Similarly, the general public have to understand that cancer can range, just like bronchitis it might be entirely harmless, or like Ebola virus it can be entirely lethal.听 The other thing that I think we could possibly do is to change the threshold as to what we call cancer.听 So, the way I look at this it鈥檚 a bit like what we do with hypertension.听 So, with hypertension we have an arbitrary blood pressure above which we consider this patient as being hypertensive.听 And so, we could change these thresholds, we could raise these thresholds, so that the patients at the lowest end of the risk scale could be now renamed not with a new name but simply in the category of benign.听 So, stop calling very low risk cancers, which should never have been called cancer at all in the first place which is not the sort of disease that most patients would consider as cancer.听 So, we stop calling them cancer.

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Porter

Well listening to that in our Glasgow studio is Margaret McCartney.

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Margaret, does that sound sensible to you?

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McCartney

Well in many ways it absolutely does.听 Doctors have created this mess and I think we really do have a responsibility to sort it out.听 As Murali says, many of these very low risk type of cancers, if we can put that in quote marks, would never have been found were it not for doctors going to search for things, really without good evidence of what they might do were they to find things.听 So, we鈥檝e much created dilemmas for patients that I don鈥檛 think we鈥檇 thought about adequately before we entered into this search strategy and then we鈥檝e left patients with lots of dilemmas and uncertainties, far more than we should have done, in terms of how best to sort us out.听 So, I think what the proposals are is a very good idea.听 But perhaps we need to take more action in different ways, as well, and also, I think we really need to test these ideas with patients, maybe even with citizens juries, you know small groups of informed citizens that can get together and try and come to some kind of conclusions about where we move on from here.

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Porter

Because, Margaret, the other way of doing this is to rather than alter the threshold is that we鈥檙e candid with the patients and say look, here we have a lesion in your breast, for instance, it鈥檚 very early, it looks relatively innocent, it鈥檚 unlikely to bother you much, rather than dive in, all guns ablazing, why don鈥檛 we keep a close eye on you and monitor it and if we explain that to each patient is that not achieving the same thing?

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McCartney

Well yes, absolutely.听 I mean what we鈥檙e really talking about here is this condition called ductal carcinoma in situ that was hardly ever diagnosed before breast cancer screening came along.听 And then breast cancer screening came along and now about between 20-25% of all breast cancers diagnosed fall into this DCIS category.听 And before breast screening started, we had very little information about what the natural history was of DCIS except that it seemed to have a very benign course, it hardly ever seemed to go on and cause big problems and that could often take decades to do so.听 But the problem was we didn鈥檛 give that information to women adequately before they had the screening which then left either with a dilemma or a dilemma they didn鈥檛 know was happening because it was going on behind medical closed doors, which I think was wrong.听 So, there鈥檚 a big trial that鈥檚 been done about a watchful waiting strategy, similar to many types of low-grade prostate cancer, the kind of watchful waiting strategy is often used sometimes for that as well.听 A big trial鈥檚 been going on for that, is about to report and hopefully will give women far better information about what their realistic options are.

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Porter

Murali, does that make sense to you, that we have to individualise the way that we communicate with patients about the results of tests?

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Varma

I agree with that to an extent.听 I think it鈥檚 absolutely right that patients who are being over-treated would be better off not to be treated.听 But surveillance also has its own problems鈥�

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McCartney

Oh, I agree, yeah.

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Varma

Right, so just when we still label them as cancer and say we鈥檙e going to follow them up, first you鈥檝e got the issue of anxiety, surveillance also has consequences for other patients because at the end of the day, like in the NHS, we do have limited amount of resources.听 So, if, as we find more and more of these harmless cancers, you鈥檙e going to have a much larger cohort of patients being on surveillance programmes.听 So, these patients have all got to be seen in the clinics, so the other patients are going to find it more difficult to find a clinic appointment or to get an MRI test and these delays, the delay in diagnosis, could have serious consequences and even death because of delayed treatment.

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Porter

Margaret, I think most people would be happy not to be followed up if they were reassured that their condition was harmless but how sure can we be that it is indeed harmless or are we pulling the wool over their eyes slightly because it鈥檚 likely to be harmless?

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McCartney

And this is where it gets really interesting.听 So, I completely agree with Murali on this, I absolutely think that you have to be really careful where you鈥檙e putting resources because you could end up putting in millions of pounds worth of resources actually doing more harm than good to people, which is the opposite of what we should want, so I completely agree there.听 I think, for me, you have to be really honest about where the benefits and risks lie here all over the place.听 There鈥檚 a fascinating study in the Lancet Oncology published a few years ago asking people what they would want to happen if they鈥檇 a set of symptoms that might suggest just a 1% risk of cancer and people still wanted to be investigated for that, there was no lower limit people didn鈥檛 think it was worthwhile to get something done and I think we have to take that on board.听 I think if we鈥檙e honest with the people at the beginning and said right at the start look this might turn up an abnormality that we think is almost always insignificant and we give people information about that and made a decision even before we begin what the path would be after that, that would make it much easier, I think, for everyone.听 But we should be absolutely honest, even about low risk as well because low risk, of course, is not zero risk.

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Porter

Never say never.听 Margaret McCartney and Murali Varma.

听

Just time to tell you about next week when I visit an inner-city GP surgery to find out how the much-promised digital revolution in the NHS is helping them cope with demand. And I learn more about a new test for pregnant women to determine more accurately who is at risk of developing pre-eclampsia, and who isn鈥檛.

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ENDS