Catherine: Of all brain tumour patients, only between 1 and 3 percent of them will only have a headache. They will almost all have something else as well. 

Rebecca: Hello and welcome back to season two of GPs Talk Cancer. I’m Dr. Rebecca Leon and joining me again through this podcast is Dr. Sarah Taylor. We are both practicing GPs and GP leads for GatewayC. We’re both passionate about diagnosing cancer early and in this podcast, we want to share our clinical experiences with you so you can make better, faster, and more confident cancer diagnosis in primary care.

So, there’s some official stuff to make you aware of. We know this podcast might be of interest to anybody, but it’s really aimed at primary care health professionals. And although all patient cases are based on real stories from clinical practice, they are fully anonymised with no identifiable patient data. 

GatewayC is the free early cancer diagnosis resource funded by the NHS and is based at the Christie NHS Foundation Trust. GatewayC is a national programme across the whole of England, Scotland, and Wales. Register online to gain access to free interactive courses, documentary-style videos, referral maps and more. 

Today we’re going to be sitting down for a coffee and talk about brain tumours with our guest Professor Catherine McBain. Catherine is a Consultant Clinical Oncologist at the Christie NHS Foundation Trust and is the GM Cancer Lead for Brain and CNS. Welcome, Catherine! 

Catherine: Hello Rebecca, thank you for having me. 

Rebecca: And I’m also with Dr Sarah Taylor. How are you both today? Did you get here okay? 

Catherine: Yes, no problems. 

Rebecca: Good, good. Sun is shining… ish! 

Sarah: Yeah, no, it was nice when I walked in. Yeah. 

Rebecca: Good. 

Sarah: Not all the way! 

Rebecca: Not all the way from home! 

Sarah: No! Because that would… 

Rebecca: She normally jogs in. 

Sarah: I’ve never jogged here! 

Catherine: Well, come from the Neurosurgical Centre of Excellence at Salford Royal. So I was in the MDT and then I’ve come straight here so it was very convenient. 

Rebecca: It’s not too far. 

Catherine: No, very close. Few minutes, eight minutes! 

Rebecca: Amazing. Okay, great. We’ll have to have you on again! So today we’re going to do things slightly differently we’re not going to be talking about cases at the beginning like we have done in other podcasts. We’re going to be weaving it in throughout the podcast. We didn’t actually want to just talk about individual patients because there are lots of different scenarios and Catherine will be able to explain that as we go along. 

Catherine: I hope so, thank you! 

Rebecca: So to start with we’re going to do some statistics – help me out here because we have quite a few! Brain tumours are the ninth most common cancer in the UK accounting for 3 percent of all new cancer cases. Up to 60 percent are diagnosed via emergency presentation often through A&E. Brain tumours have the worst years of life lost of all cancers with 20 years lost life on average. 22 percent of people diagnosed with a brain tumour visited their GP three times or more prior to being referred. The incidence of brain tumours rise with age but it is potentially worth noting that brain and spinal tumours make up around a quarter of all childhood cancer diagnoses and also affects young adults. 

Sarah: Presumably that’s why the number of life years lost is so high in those for brain tumours.  

Catherine: I think one of the most important things to understand is that there are so many different types of brain tumours. There’s over 130 different types but when, and so when we think about it there’s almost distinct sort of age groups. Numerically malignant brain tumours are most common in older people so incidence increases in age peaking actually in the 80s but about 25 percent of people diagnosed in the over 75 age group and those tend to be the malignant brain tumours. These are the primary malignant gliomas, grade four gliomas, also called glioblastoma and that’s effectively primary brain cancer. In younger age groups you get entirely different types of tumours. So in children you’re more likely to get lower grade. But the particular group where I think, which I think is one of the most difficult and most challenging groups is the young adults. So people in their 20s and 30s can get grade 2 or grade 3 gliomas and these are the ones where they can present often with symptoms that have been going on sometimes for numbers of years and those symptoms can often be very non-specific. Sort of with things like personality change or unrecognised epileptic seizures not generalized seizures but more subtle symptoms. And I think that’s the group that are probably the most challenging for both GPs and also for patients because we know that a lot of those patients have seen their GP a number of times before they’re diagnosed, entirely understandably often, whereas the older age group where the tumours are more aggressive they tend to present more acutely because they’re growing more rapidly. And in that age group if they get symptoms such as a seizure or new neurological deficit the question is have they had a stroke. Therefore they get sent to casualty. They have a brain scan. It’s not a stroke, it’s a tumour and everything goes from there. So those are the groups, that’s why about 60 percent of them present through A&E because there’s that type of acute event. But it’s the groups where there’s a slower more sort of crescendo-ing of symptoms sometimes over months or years which I think are some of the most challenging groups. 

Rebecca: So it’s this statistic, isn’t it Catherine – the 22 percent of patients visiting their GP three or more times because of those subtle changes. 

Catherine: Correct. So for the people who go to work in the morning feeling completely normal and then suddenly out of the blue have a seizure, an ambulance is called, off they go, no delayed diagnosis there. But it’s the people, but even in the group of patients who develop a new neurological symptom like weakness of their arm or leg or loss of speech, who then wind up presenting acutely actually when you take a history from them the vast majority of them will have had some prior symptom, often very subtle, quite often cognitive change like sort of things that get written off as sort of anxiety or fatigue or just absent mindedness or getting a bit older but even of the people who present acutely almost all of them if you ask them with the benefit of hindsight do you think there was anything changing, they will almost all say yes you know I hadn’t, I hadn’t been quite as sharp with my, with my memory or my thinking. So there’s been, often been something subtle there in the lead up. 

Sarah: This is sounding a bit like a nightmare really, Catherine, because a lot of these symptoms that you’re talking about, are about 50 percent of our surgeries, aren’t they. So how are we going to hone down on which patients we should be concerned about? How do we do this? Because some of these symptoms, particularly in younger people are really common in people with anxiety and… 

Catherine: Absolutely and that’s why you know general brain tumours are such an anxiety provoking area for both GPs and for patients. GPs obviously tremendously scared and worried about having missed a brain tumour. Patients very worried that maybe they have a tumour and maybe it is being missed. So how do we begin to tease those two things out? Well I think in any age group regardless, I think the key symptoms are, the key things are symptoms of brain tumours progress. So if we’ve got a symptom which is becoming, which is increasing in frequency or severity over a period of months that should really raise red flags. Whatever that symptom is whether it’s someone who is having… We’ll come back to headaches, I think… but if it’s someone who is, who is having headaches, those headaches may be increasing in severity really quite markedly. It’s that progression and to have other symptoms associated with it. So again cognitive changes is tremendously common. We think of more subtle symptoms which ultimately may turn out to be unrecognised seizures. Again, both patients and GPs think about seizures as being generalised collapse, shaking of all your arms and legs but actually seizures can be what we call complex partial seizures which used to be called temporal lobe epilepsy and that’s the one where you can get sort of a feeling of of sort of overwhelming doom or dread or smelling unusual smells like burnt, classically like burning rubber. And so again those are symptoms which can be easily written off but if you’re getting a very clear history of someone having these episodes, so when you’re taking that type of a history you want to ask about these episodes happening sort of as a freestanding thing and then they go away again and people often feel very tired after those episodes. And often you can elicit a history where they’re happening for a set period of time a few seconds, a few minutes, but increasing in frequency, increasing in severity. That’s one element of history taking. But again with other things, symptoms like cognitive change particularly as we’ve talked about these tumours are more prevalent in older adults and so progressive cognitive change can present like dementia type symptoms but those again it’s all in the history because it’s about, because the cognitive change related to a brain tumour will progress usually more quickly than cognitive change related to dementia. So again, and also there will be other symptoms coming in. So in summary, who do we worry about, who can we reassure – the main people to be concerned about are people who perhaps haven’t come to see their GP a lot and who are suddenly coming quite often and  having symptoms which are increasing in frequency and severity and they’re getting different symptoms so as well as cognitive or changes in their memory they’re getting some changes in their speech. They’re getting a bit of weakness of their arm or they’re having episodes where their family think they seem a bit vacant and it’s about pulling all of those things together. 

Sarah: It’s like we talked about a couple of weeks ago when we were talking about oesophagogastric cancers and we talked about persistent and progressive symptoms, didn’t we. So I suppose it’s persistent and progressive things. And I wonder, just as you’re talking I’m just wondering about the benefit of using… I mean I love patient diaries because they do give you a much clearer idea but it’s sounding like some of these things are things that would respond very well to patients keeping an accurate record over the period of four weeks, six weeks of exactly what symptoms they’ve got so we all know exactly what’s going on. 

Catherine: Very much so. 

Rebecca: So as well as diaries because I’m a big fan of diaries as well is asking for an informant as in somebody that they live with taking a history from them. How important is that? 

Catherine: Vital, very much so. Because again things like cognitive change, so if we talk about that sort of symptom where people can present almost like a dementia type picture. When people initially develop those types of symptoms you know as we all know confusion can be related to urinary tract infection, can be related to anxiety, stress, all sorts of things. But it’s that progression and people may not always have complete insight into that themselves. Sometimes they can present very acutely, they may be are driving somewhere that they know very well and they get lost. But sometimes it’s much more or they will deny that there’s any problems but it’s family noticing that they’re really sort of tangibly becoming progressively more forgetful, forgetting where things are in cupboards, maybe getting again getting lost in familiar areas. But how do we differentiate that? It’s the it’s the speed of progression and also asking about other symptoms such as weakness and the other one is visual field loss, not just changes in vision like blurred vision or changes in visual acuity but actual peripheral visual field loss. So again the other thing that’s very well worth thinking about is people often present if the tumour is disrupting the optic pathways in the brain so they lose vision they get a hemianopsia and that means they’re bumping into things. So they might be bumping into lampposts or bumping into door frames or if they’re driving, clipping wing mirrors as they’re driving down the road or bumping into cones on a contraflow, that sort of thing which again can be sort of written off as a bit of absent mindedness, a bit of nothing but it’s this picture of pulling together lots of subtle things. 

Sarah: When we did the module I went to, spoke to a brain tumour group at Salford and one of the women there was saying that her initial symptom was that when she was walking she was finding that on uneven surfaces she was needing support so she was needing to hold onto her husband’s arm to walk along uneven surfaces. If it was flat she was okay but she just didn’t quite have… I imagine it was just the proprioception or something in her foot that wasn’t quite right, so she was falling, she was tripping and it was very subtle but it was just getting worse. And the surfaces she could walk along were getting sort small, smaller and smaller. So you know initially she couldn’t walk along cobbles and then it was just uneven pavements and this sort of thing So… 

Rebecca: The more I think about our job, Sarah, I mean you’re talking about the dementia patient I have a… an older age population where I work and I come in with worried relatives about their family member with worsening memory, potential personality changes and we put it down to is this a cognitive impairment? Is it a potential dementia? Or is it anxiety and depression? It’s so difficult to differentiate. So it’s these plus symptoms, isn’t it. And it’s the progression we have to look at. Can we just talk about a headache? 

Catherine: Yes, I was about to say that! 

Rebecca: But yeah, because headaches are something that all GPs think is it something? And I know patients are thinking is it a brain tumour or is it a common migraine? Can you talk to us about headaches and when we should be more worried. 

Catherine: Yeah, sure. So to have headache alone as your only symptom of a brain tumour is tremendously uncommon. It occurs in of all brain tumour patients only between 1 and 3 percent of them will only have a headache. They will almost all have something else as well but if we think about people who come to see us with headaches the first thing to say is that first of all emphasise the fact that brain tumours are really not common. And to have an ordinary what we call a primary headache i.e. a headache with no apparent cause is by far the commonest thing. And GPs should feel, still feel confident. There are very good headache guidelines out there to work through those steps about headache and not feel too frightened to do that. Similarly with migraine again there are good diagnostic criteria out there for migraine. But what are the ones where we should really worry about? Well it’s the ones, so first of all I suppose anyone who’s got a past medical history of a cancer diagnosis, that’s the first thing. If you’ve got someone with a headache who has got a previous diagnosis of particularly lung cancer, breast cancer, melanoma or renal cancer your bar should be different because brain metastases do develop in people with previous cancer diagnoses. Less common in things like prostate cancer but your bar should be different if you’ve got someone particularly breast or lung or melanoma, your bar should be different. So I suppose that’s the first thing to say. Secondly, we talk about this sort of syndrome of ‘headache plus’ and so we should be asking in people with headaches – do they have anything else going on? So like you were describing like someone tripping or sort of veering when they’re walking that can be an early sign of foot drop, which can be an early sign of sort of limb weakness where they’re just not picking their feet up properly getting upstairs or over curbs, sort of in coordination maybe sort of you know finding that their writing is a bit different, visual field change like we’ve talked about in terms of sort of loss of vision on one side. And then there are also the classic things that you know we’re all taught at medical school about sort of symptoms of raised intracranial pressure. But again if you’ve got symptoms of raised intracranial pressure that’s… That tends to be quite dramatic. You know about that. You’re not going to miss that. So in summary who do we worry about with headache – headache plus. So ask for these other subtle symptoms that we’ve, that we’ve, that we’ve talked about but also progression. So is it a clear history of a new headache which is steadily getting worse over a period of weeks or months and which is also then becoming associated with other things. So those are, those are really the things to be concerned about. There’s also quite an interesting body of work about verbal fluency and the ability to name numbers of animals in a minute… 

Sarah: Oh I remember this from the module, yes! 

Rebecca: Give me an example, what do you mean by that? 

Catherine: So there’s a piece of research – headache purely on its own is unlikely to signify a tumour, however if it’s a headache combined with cognitive symptoms that increases the positive predictive value to about 7.2% and so there’s quite an interesting piece of research. There are different types of cognitive screening tests but one of them is a semantic verbal fluency test. And so this is a tool which has been used as a cognitive screening test in various neurological conditions including dementia multiple sclerosis and also sometimes used as a screening tool in brain tumour. And there’s papers on this where if patients are asked to name as many animals as they can in a minute, if they achieve a low score on that, the chances that their headache is a sinister headache is much higher than if their cognition is good and it’s just headache on its own. But again there are other ways of assessing cognition but it’s just to sort of again, it’s the fact that it’s headache plus headache with other symptoms. 

Rebecca: It’s funny how it’s about animals, you know it could be… They’ve obviously looked at things like name number of vegetables and fruit but could you name 17 animals? 

Sarah: I would hope so now after what you just said but yes! Can I just… So just on what you were talking about… because this is difficult, isn’t it. So one of the things that I often do with people with new headache is ask them to go and see the optician, is that a useful thing to be doing?  

Catherine: Very useful, yes. 

Sarah: Excellent! 

Catherine: Because… a couple of reasons. First of all, if someone does have a headache which is related to raised intracranial pressure, again we’re all classically taught about papilledema and swelling of the optic disc but it’s notoriously difficult for us to see that accurately. Even when you’re told it’s present, it’s really hard to be convinced. Whereas the optician has proper equipment. First of all they’re more experienced in looking at this, but also they have things like OCT scans which  can detect more subtle change. So first of all seeing the optician very useful for detecting papilledema or maybe even earlier changes of optic disc swelling but also very useful for objectively testing visual fields and seeing whether there is visual field loss. Because if there’s visual field loss that’s, that’s a really hard neurological sign. There’s very little else that does that. 

Sarah: So you’re suggesting that’s more accurate than Rebecca and me going like this…?! 

Catherine: Well… I do a lot of finger waving as well for the purposes of a podcast, Dr Taylor’s waving her fingers in the air! Confrontational visual field testing. No, absolutely. I mean you unquestionably do get, often you know sometimes once a diagnosis is established, they can have really gross abnormality in cognitive visual field testing where you can move your finger all the way into the midline before someone’s actually able to see it. That’s terribly common. But if we’re talking about early diagnosis and early symptoms you’re probably getting more subtle change which is less well detected on that type of clinical testing but which if an optician does a sort of a proper visual field test be, might become apparent. 

Sarah: So you talked about raised intracranial pressure being the thing that we all learnt about at medical school and it’s one of the things I think we probably all do run through a checklist on but just remind us for the sake of the podcast what things we should be asking… 

Catherine: Yeah sure, so raised intracranial pressure. Classically headache which is worse in the morning. Headache which is worse when you bend down, if you cough or sneeze or strain. Headache which becomes associated with nausea or vomiting and visual disturbance, and then ultimately drowsiness and reduced levels of consciousness. So raised intracranial pressure unquestionably is a symptom, is a presenting symptom of brain tumours. I think the point is that if you, if you’re getting those symptoms they usually become pretty apparent quite quickly because people often deteriorate quite quickly. And so raised intracranial pressure can be caused by different things. It can be caused by a tumour just physically growing and causing increasing swelling and increased pressure in the brain but it can also be caused by an altogether smaller tumour just in a difficult place i.e. sort of at the back of the brain in the cerebellum causing the fluid, causing obstruction of the flow of fluid from the ventricles and then you get hydrocephalus. So again if we think about those two different situations without getting too deeply into it just the point is, is this really – if you’ve got an older adult who has a high grade aggressive glioma which is causing raised intracranial pressure that’s usually quite a dramatic sort of story. Things tend to escalate really quite quickly, and that’s someone about whom you’ll be really quite worried because they’re going to be you know really sort of flattened by this headache and it’s going to be associated with with vomiting and really quite, really progresses really quite dramatically maybe over two or three weeks. And we do meet people who’ve been reassured in that situation you know and told it’s just migraine, if they’re photophobic or vomiting, told it’s just migraine. But again, back to the key is it’s progressive. More symptoms are coming in, so it starts off with headache but then you also get photophobia, then you also get vomiting, then you also become unsteady, then you also become drowsy. That’s where that story should be causing you worries. But then the other situation for raised intracranial pressure is where you have a tumour at the back of the brain in the cerebellum causing obstructive hydrocephalus and that means that you’re getting a build-up of pressure within the brain because of the blockage of fluid, and what’s important there is those are the tumours that occur in the children and in the young adults. And so if you, and that can be a slower process because that tends to be a lower grade tumour which grows more slowly and the hydrocephalus can build up more gradually. I saw a woman recently who had been pregnant, she had had progressive… She began with nausea, vomiting and headache when she was about six weeks pregnant. And of course the headache and the nausea got worse during her pregnancy, and she’d never had any troubles with her previous pregnancies She gradually became unsteady and anyway long story short she was ultimately diagnosed with hydrocephalus from a tumour which was obstructing the flow of fluid. But it’s you know these things happen and she, she’s fine now which should just be said. She had an operation. She’s fine, the baby’s fine. But it’s, it’s the, it’s the fact that raised intracranial pressure can be really sort of crescendo, really dramatic and that’s often in sort of not necessarily elderly people but definitely sort of older adults sort of you know fifties, sixties. But also think about a more sort of subtle sort of build-up in younger people because they’re the ones where they’re getting the slower growing tumours that are causing the blockage of the flow of fluid in the brain. 

Sarah: So what you’re saying with most of these, that there’s a group where things are very acute and we’re probably not going to have that much input because something’s going to happen so quickly that it’s really obvious or so quickly that they’ve gone straight to A&E. But in the other group, and I think this is, it’s what we talk about quite a lot really… The other group there’s a whole… It’s history that’s important that actually as you know GPs were unlikely to pick up some of the very subtle visual or neurological signs but actually the history is absolutely key and it’s those persistent and progressive symptoms, an unusual new onset that we should be absolutely pinning down and that when we’re asking about things like headache or any neurological thing we should be asking about all the other slightly odd things that people might have noticed and might not have recognised as being unusual. So you know just bumping into, having more bruises on your left arm than your right arm might be significant. 

Catherine: Very, very much so. And different symptoms coming in. So over time, additional symptoms, new things beginning to happen and any given symptom that you’ve got increasing in frequency and severity. Because I think we all sort of worry, you know we’re all sort of very fixated again at medical school about trying to do neurological examinations and checking reflexes and all these things. Again in a lot of these, in the people who present you know like we said very acutely query stroke with a new onset left sided weakness, yeah they’ve got really gross neurology but pretty… you will a very large number of people certainly with low grade gliomas have no fixed neurological signs. And so I would suggest that that time that you would be otherwise spending running around looking for a tendon hammer is actually better spent taking a really detailed history. 

Sarah: Well that suits me very well because I’m not very confident on my neurological examinations! 

Catherine: And don’t even go looking for an ophthalmoscope just send them to their opticians! 

Sarah: Absolutely! 

Catherine: But it really is, it’s about the conversation and so I really genuinely would suggest that it, you know, okay neurological examination is important but if it’s normal, if it’s abnormal, it’s not the discriminator. 

Sarah: It’s not going to reassure me at all, you know. 

Catherine: It’s the history, the progression, the the range of symptoms coming in at different times. 

Rebecca: So it’s the safety netting as well to actually say come back and see me in a couple of weeks and actually book the appointment. Continuity is important as well. 

Sarah: I think it probably is, yeah. 

Rebecca: So seeing the same GP, seeing the same clinician so you can see how things change. I just wanted to ask you about some of the support groups that we can signpost patients to. Where would you recommend, Catherine? Which are really helpful? Because it’s not something we see very often but there are certain, certain charities and certain organisations that can help. 

Catherine: Yeah. So again this is really important because we talked at the beginning about the fact that you know there’s 130 different types of brain tumour and what’s really important is that people are reading the right things. Because if you have someone in their twenties or thirties with a low-grade brain tumour where the natural history can be five, ten years, decades… If they are, wind up reading about a very heavy duty sort of on a brain cancer website, where where you know average survival you know maybe only is about 12 months that can be very distressing. So the first thing to say is it’s really important that people are reading information which specifically pertains to their tumour type or their age group. The Brain Tumour Charity is very good, The Brain Tumour Charity is one of the leading fundraisers and one of the leading charities in the UK. And they actually have Facebook groups which are diagnosis specific and that’s really important. So they’ve got really good quality information and diagnosis specific Facebook groups. Brainstrust is also an excellent charity, very, very good source of support and also for people living with and beyond a tumour. They have a, they have coaching programs and and thriving with disease and not just coping or managing actually thriving. Brain Tumour Research, Brain Tumour Support… So the charities are very good. Macmillan Cancer is also very, very useful. But if we’re signposting to charities again I would just caution your patients to make sure that they’re reading about the correct type of tumour because we certainly get young people reading about very aggressive, you know, incurable tumours which is absolutely not what they have. 

Sarah: Yeah, so I suppose from our point of view it’s just making sure that they speak to the specialist nurses, the consultants and just say where should I go. Because I don’t think we’re going to know where to steer for all 130 different things. But actually your CNSs presumably that’s one of the things they do all the time. 

Catherine: Very much so. 

Sarah: So we just need to have that awareness that not all brain tumours are the same, which… and brain tumours are probably very much more different, that’s quite different from a lot of other tumours. Obviously there’s a difference in stage but actually a lot of the time, the rest of the time there’s… 

Catherine: Yeah, the population is so different because what symptoms you have depend on which part of the brain is affected and then on what type of tumour you have, because again it’s you know, it’s you know neuro oncology is applied neuro anatomy so the symptoms relate directly to the part of the brain affected but then they also relate to the type of tumour you have because that dictates how quickly your symptoms might change. But if you, if we’re talking about where to signpost people The Brain Tumour Charity will get it right, they’ll put them in the right place. 

Sarah: Perfect. 

Rebecca: You’ve also got the added complication of the incidental findings as well. 

Catherine: Very much so, yes. 

Rebecca: So those tumours that will probably or may not cause problems and what do we do and it’s heightened anxiety, you’re looking for something else and then something pops up. What do we do about those patients? 

Catherine: Yeah so this is a really important thing to talk about so I’m glad we’re talking about it. So again a couple of things here. First of all, let’s talk about incidental, pure incidental findings. So somebody goes in has a brain scan for a completely different reason. So again, if we divide them into groups – so brain metastases patients increasingly are having screening brain scans. So if you have, if you have lung cancer of an advanced, of particular stages even if you have no symptoms you will have a screening brain scan often to look for brain metastases. So you, and that may pick up a different type of primary brain tumour like a meningioma. Or people may have a head injury or a fall and have a brain scan done for that reason. Or they may have something like a TIA and then have a brain scan for that reason. There’s lots of reasons why people have brain scans. So the commonest types of incidentally found tumours are the benign ones. So meningiomas are tremendously common. Meningiomas 90 percent of them are grade one. Huge numbers of them do not need any treatment at all. They can exist for decades. They’re more common in women. They can, this is what was on… There was a bit of publicity recently in the media about progesterones causing brain tumours. So this relates specifically to meningiomas. Meningiomas can have progesterone receptors and so they can be seen to grow during pregnancy So that’s why they’re more common in women. 

Rebecca: I think I remember writing to you about a patient who was on HRT and who had an incidental finding and what do we do about. 

Catherine: Absolutely. And so if we have people so again we’re not talking gliomas here, we’re not talking brain cancer, we’re talking meningiomas so benign tumours on the on the covering of the brain. But if somebody has a meningioma which is progesterone receptor positive, they ought not to be on a progesterone only preparation like HRT or the pill or or Depo-progesterone. So in terms of, to come back to your question about what we do about incidentally found tumours – they often require no treatment and it’s giving patients the confidence to understand that, and that’s again why it’s important that people are reading the right type of information because if you have a small meningioma that’s not causing any symptoms or or pressure effect, you really have pretty much you have very little in common with someone with a glioblastoma. So that’s why it’s important that all, we’re really clear that all brain tumours are not the same. If people have an incidentally found low grade, and you know we use for grade 1 brain tumours come in 4 grades – 1, 2, 3 and 4. For grade 1 we do tend to call those benign. Most meningiomas are grade 1. The neurosurgeons will often see them, so if it’s picked up on a scan they will often get a neurosurgical clinic appointment to talk it over and the natural history is explained, the fact that they would be offered surgery if it was, if they needed it, if it was causing pressure on the underlying brain. But for many, many people they don’t need that and it can simply be monitored. There are other types of tumours which again you know can often be incidental findings. Tumours in the pineal gland, for example, but usually people in that situation are offered a neurosurgical appointment just to talk it over. But that brings us then onto the next question because one of the things we haven’t yet touched on is GP referral for imaging. Because the problem obviously is that there’s a, if we, well we’ve talked about which headaches worry us and which headaches maybe we can, we can reassure but one of the difficulties is that sometimes if we’ve got an anxious patient who’s got headaches who perhaps is good at advocating for themselves and who is determined that they want to have a brain scan to rule out a tumour. And then we do a brain scan it shows something incidental And up to between 7 and 10 percent of brain scans can show incidentalomas, incidental findings, which are and you get lots of different types of incidental findings in the brain. You can get changes in blood vessels, you can get developmental abnormalities, lots of things which we would often probably be better off not knowing about. But one of the most difficult scenarios is if you’ve got someone who has had headaches, you’ve done, probably irrelevant headaches common or garden headaches, but you’ve done a brain scan for ‘reassurance’ in inverted commas then that shows a completely benign finding which won’t be the cause of the headaches then you’re in a, in a difficult space. And so it’s a conversation about brain scans done for reassurance don’t always provide reassurance, they can open a whole different can of worms which is why it’s really important to be really clear about the history and be really clear about who we’re referring for scans and… 

Rebecca: And that was going to be my question and I’ve actually scribbled it down here about you have a patient who you suspect there may be something and it’s not the patient that shouts loud enough saying ‘I’ve got a headache, I want something’ but actually there is something fairly, fairly significant, progression and if there’s a patient that I’m suspecting may have something, do I organise a two week wait plus a scan? Or do I organise a scan and wait for the results? Or do I just do a referral? 

Catherine: All very difficult and has to be individualised, I think it depends on the patient in front of you. So a couple of things, first of all if you’ve got someone with really rapidly progressive neurology that’s not unreasonable to send them in to A&E, or a first seizure. If you’ve got something like a first seizure and they’re okay, they can go to the first seizure clinic for neurology. If they’ve got somebody who you think is TIA, they can go to TIA clinic. And again we know that there are quite a significant percentage of brain tumours picked up via those routes. If you have someone who has, again, if you have someone, if you’re able to request a CT locally and you feel comfortable doing that then that’s not unreasonable. But the important thing to know is that a normal CT does not rule out a brain tumour. So we’re talking about these low grade gliomas in adults in their 20s and 30s. They will be completely invisible on a CT, they may be completely invisible on a CT scan. And so for that reason you need an MR. I don’t think many GPs have the ability to direct access to MR. And again we’ve had this, you and I have had this conversation before Sarah, because the problem is that if as a GP you request an MR and it comes back with an incidental finding what are you going to do with that? Secondly if you’ve requested an MR in someone who’s got difficult and sort of diverse and ongoing neurological symptoms, okay you’ve got an MR that’s reported as normal but you’ve still got a patient with all those symptoms. And so for that reason, referral to neurology is not unreasonable. Two week wait pathway for brain tumours, we know that only around 1 percent of all brain tumours are diagnosed via the two week wait pathway. So the pickup rate via the two week wait pathway is low. Now there are ways to increase that and locally in Greater Manchester, Sarah, you and I have a Greater Manchester referral form which just outlines some of the things we’ve been talking about – headache plus the various neurological symptoms that we’ve been talking about. So if it’s a really targeted history and you’ve got headache or you’ve got that raft of neurological symptoms progressing, that’s a perfectly reasonable thing to put on a two week wait because if they’ve really got history that strong they’re heading for a brain scan anyway, depends on how they get there, whether they get there via elective neurology, via two week wait or by casualty. What we often find actually is that even if a GP has requested a planned MR scan, often things change and patient winds up in A&E before the appointment for the brain scan comes through. So should you be requesting a brain scan? It depends on how confident you feel, it depends on what the access is in your area, it depends very much on your patient. So it’s really hard to generalise is the answer. 

Sarah: My preference is not to request it personally because I don’t want to deal with the results because I think they are quite complicated. 

Rebecca: And then also a routine neurology if the CT or MRI is normal but they’ve still got neurological symptoms is about 12 to 18 months. Yeah, it’s a real minefield! 

Sarah: It is. 

Rebecca: Okay so it was good that I asked the question but it’s up for debate and I think as you say it’s individual depending on what’s in front of you. 

Catherine: And it’s all in the history! 

Rebecca: It’s all in the history! 

Sarah: Which is what we like. 

Rebecca: We like that. Rather than all in the…  

Catherine: The whether or not you can locate a tendon hammer in your practice! 

Rebecca: Yes! 

Sarah: I was a bit surprised the other day when somebody had put a message out on our message system saying please can somebody find me a tendon hammer. I was thinking why do you want that?! 

Rebecca: Or a tuning fork! 

Sarah: Oh my goodness! 

Rebecca: There we go, I need you to ask for that this week please Sarah! 

Sarah: Everybody will fall off their chairs and laugh! 

Catherine: And yet we can all remember what exactly what we would examine for with the tuning fork I bet, albeit that it’s been decades since any of us actually did that. 

Rebecca: Absolutely! Are you not using them regularly? 

Catherine: Funnily enough, no! God gave us MR scanners. 

Rebecca: There we go! Okay, have we covered all our points? 

Sarah: We have but we do have an interesting fact. 

Rebecca: Okay. 

Sarah: So just to let everybody know that the the DVLA regulations were updated in January this year, so January 2024. Just to say that patients with brain metastases or low-grade tumours, no longer have to stop driving which I think is really quite significant for them and it’s very important for us to know. 

Catherine: Provided they have no symptoms, that’s the big caveat. So the DVLA substantially overhauled their driving regulations. It was published in January 2024 and it’s so much better than it was. It, what it does is it, it differentiates, because it… Whether or not you can drive is really all based around seizure risk because obviously the DVLA and indeed none of us want anybody having a seizure and whether, your risk of seizures varies a lot with the type of tumour you’ve got and whereabouts in the brain it is. So if you’ve got tumours in your cerebellum, chances of a fit are really remote. And so what the new DVLA guidance does is it breaks things down much more, in a much more intelligent fashion, rather than being so broad brush, it’s much more broken down into very low risk, low risk, moderate risk, high risk. But the important part is that if you have no symptoms and you have a tumour picked up as an incidental finding, you no longer have to automatically, immediately relinquish your driving licence. You still have to tell the DVLA, there may still be a process, but for those people who have a screening MR brain scan, or who have a low grade glioma which is not causing them any symptoms, those people no longer have to automatically stop driving because we were in a situation where people were driving themselves to hospital, no problems, no symptoms, have a brain scan done for a different reason and suddenly they’re told they mustn’t drive again and their car’s parked in the car park and they’re not allowed to drive home. So it’s, it’s, it’s, it’s got around all of that, but let’s be really clear that it is only if you have no symptoms, it’s only if you have no symptoms whatsoever and you’ve never had a seizure. 

Sarah: And you still to tell the DVLA. 

Catherine: And you still have to tell the DVLA, but it, but it is change and it’s, it’s a positive change. And for some people, the ability to regain their driving licence has become again, more thoughtful and should be a more straight forward process than it was previously. 

Sarah: Brilliant. 

Rebecca: Okay just some key clinical points I think it’s good just to go over. I’m going to talk about the headache alone is an uncommon presentation on its own. So you need to think about other symptoms. So the headache plus that we’ve talked about in detail. Catherine would you want to do a key clinical point? 

Catherine: I think the key clinical point is I make no apology for coming back to what I’ve said before – patients with any neurological symptoms, subtle symptoms like sort of vacant episodes or sort of overwhelming feelings of funny sensations of smell or, or, any subtle symptom, episodes of loss of speech, increasing in frequency and severity, that’s what you need to worry about, regardless of what it is. 

Sarah: And last one, most patients with a brain tumour present acutely up to about 60 percent in emergency settings. 

Rebecca: If you turn over we’ve got some more! 

Sarah: Ahh! 

Rebecca: So a normal CT does not exclude a brain tumour. Throughout our podcast we’ve been realising that these investigations that we have, doesn’t really help! It’s 25 percent of chest x rays don’t pick up lung cancers and it’s similar with a CT doesn’t exclude a brain tumour. And an MRI is the investigation of choice. Catherine, you have so eloquently – I love that word eloquent! – eloquently discussed all the key clinical points that we’re just mentioning them again. So I think we’ve come to the end of this fascinating podcast which I’ve certainly learned a huge amount – go to the optician! 

Sarah: Absolutely and don’t wave your fingers around! 

Rebecca: Don’t wave your fingers! 

Catherine: You can wave your fingers around, just don’t expect it to be definitive! 

Rebecca: And you’ll be looking for a tendon hammer and… 

Sarah: And a tuning fork! 

Rebecca: … This week! There we go. So thank you both for this fascinating podcast and that’s it for today. So thank you both Sarah and Catherine! 

Rebecca: Thanks for listening to this podcast from Gateway C. We hope you’re enjoying this series. Please do support this podcast by leaving us a review or rating wherever you get your podcasts. And if you’ve got any topic suggestions for future episodes, we’d love to hear them. Please do include these in your review. If you’ve found this or other episodes interesting and helpful to your practice, please do share it with a friend or colleague. It really does help to spread the word. We’ve got a free brain tumour course available on the GatewayC website. All referenced studies and guidelines are in our show notes. Thank you again for listening and thank you to our producers, Jo Newsholme from Rethink Audio and Louise Harbord from GatewayC. See you again soon.