A total of 39 patients were interviewed; their mean age was 53 years and 18 (46%) were female. The commonest diagnoses were glioblastomas, located in the frontal region (Table 1).
Although headache and seizure (without preceding symptoms) are generally considered to be the most common presenting symptoms of brain tumours in primary and emergency care, headaches and seizures were only reported by half the participants (n = 21; 54%). More patients reported changes in cognition (n = 26; 67%) and sleep (n = 22; 56%). Furthermore, almost all participants (n = 38; 97%) had noticed multiple changes or symptoms before either routine or emergency presentations.
Four main themes were identified in participants’ narratives: people experience ‘changes’ rather than ‘symptoms’, which are often first noticed by others; multiple subtle changes precede brain tumour diagnosis; not all seizures are the same and few come ‘out of the blue’ (that is, without any prodrome); and quality of patient–GP communication. These themes are presented in detail below, with quotations contextualised with the participant’s ID number, sex, and age group.
People experience changes rather than symptoms, often first noticed by others
Participants frequently described ‘changes’ or ‘something not quite right’ rather than ‘symptoms’. Some changes related to their body, and others to the way they approached daily living activities, work, hobbies, or relationships (Figure 1).
Figure 1. Changes or symptoms experienced by participants before their brain tumour diagnosis.
Some changes were very subtle and difficult to notice; sometimes the participant was unaware of a change until someone else pointed it out:
‘I felt OK, I didn’t feel as though there was anything wrong with me, but looking back now I can see what [my wife] was worried about.’
(Participant [P] 30, male [M], 71–80 years)
Sometimes friends or family had noticed a change, but did not say anything until after the participant had been diagnosed:
‘People … wouldn’t say anything at the time but now they say, “We noticed you haven’t been quite yourself for 6 months”, but they are little things that people wouldn’t say, “Go to the doctors and get sorted.”’
(P10, female [F], 61–70 years)
Multiple subtle changes precede brain cancer diagnosis
Figure 1 demonstrates the diverse range of changes experienced that made the participant think ‘that is not me’ or a person close to them report ‘you weren’t quite yourself’.
Experiencing these changes or symptoms often led to less engagement, less interest in or a change in ability to carry out work, hobbies, caring responsibilities, and daily living activities. ‘Seizure’ does not have a separate locus in Figure 1 as any of these changes could precede or be a part of a seizure. These changes are described in detail below. To summarise, changes were noted in cognitive function (‘brain not working properly’, changes in speaking and writing, changes in comprehension, changes in memory, and changes in concentration and ability to multitask); in sleep; in how the patient’s head feels (‘I wouldn’t say it’s a headache …’ and a new or different headache); in balance, sensations, and senses (body parts weak or not working, changes in vision, changes in hearing, and changes in taste or smell); and, in the person, being ‘out of character’.
Changes in cognitive function: ‘brain not working properly’
People described not being able to do things as they used to, or being less accurate or not ‘on the ball’:
‘I could feel myself getting a bit slower in work. I was struggling to do and think of all the things that I’d normally do … I just knew I wasn’t as quick and I couldn’t think ahead as much and it just wasn’t the same.’
(P37, F, 31–40 years)
Some people noticed very subtle changes, whereas others described having to put extensive thought into everyday tasks:
‘If I’m trying to do something, sometimes you have to stand there for about 5 to 10 minutes and figure out how I was going to do it.’
(P33, M, 51–60 years)
Cognitive changes often made people feel frustrated, irritated, confused, or anxious. Participants and their family members described four main types of changes in cognitive function as outlined below.
Changes in cognitive function: changes in speaking and writing
Many participants and their family members noticed that speech changed, often intermittently. Some experienced difficulty finding or saying words, whereas others noticed odd sentences with random words:
‘I’m trying to say something … I can think it, but it doesn’t really come out. I can’t find the right words, really.’
(P39, F, 21–30 years)
Many also mentioned problems with spelling, with text messages or emails becoming full of errors or lacking sense. Participants found texting became more difficult and took longer, leading some to replace text with emoticons or stop sending texts altogether:
‘I’m normally a pretty good speller, but I couldn’t remember how to spell words and writing up notes at work was a bit of a concern ‘cos I was forgetting how to spell.’
(P03, F, 31–40 years)
‘Total gobbledegook, because I pushed the wrong key, predictive text. So then I took the predictive text off, but then it was even worse. It could take me 10 minutes to write an email.’
(P32, M, 71–80 years)
Changes in cognitive function: changes in comprehension
Most participants noticed a change in their understanding or processing of information. Some people struggled to understand what was being said or how long it would take to complete tasks:
‘I’ve got this catch-up, it takes me a while to realise what they’ve said and quite often I’ll ask them to repeat it or sometimes it just takes longer to have got through.’
(P24, F, 41–50 years)
The greatest impact was on reading. Some patients reported having to frequently re-read text or stopped reading altogether:
‘Although I was having trouble reading, I was also having trouble understanding what the words were saying … I couldn’t be bothered to read because even if I could read it, I didn’t really understand what it was telling me anyway … The plot was disappearing every other page.’
(P32, M, 71–80 years)
Changes in cognitive function: changes in memory
Memory was affected in a range of situations, including people forgetting where they had left objects, what they were doing or thinking about in the moment, completing tasks as intended, or names or places:
‘Probably [for] the last 6 months, they all used to laugh at me and just say “Who’s got more dementia, you or your mum?”’ (P05, F, 41–50 years)
Family (Fa):‘He kept forgetting things. He kept forgetting people’s names. And places. He couldn’t remember.’
Patient (P):‘People I’ve known for 40 years, I couldn’t remember names. Really couldn’t and that’s what really upset me.’ (P33, M, 51–60 years)
Changes in cognitive function: changes in concentration and ability to multitask
Some noticed that they were struggling to concentrate or focus:
‘Whereas before that he could get to work with his eyes closed basically, he was actually questioning himself, “What have I got to do next? What am I here for?”, that sort of thing. He … kept saying, “I can’t concentrate.”’
(P19, M, 61–70 years)
Others found that they could only concentrate on one thing at a time, and therefore developed difficulty with multitasking:
‘I was trying to plait her hair and test her on the spellings and I had a funny turn and it was just too much, I just couldn’t cope with looking, listening, and doing.’
(P37, F, 31–40 years)
Changes in sleep
For some, sleep became disrupted and they often struggled to go to sleep, frequently waking up, not sleeping well, or waking earlier than usual. Others described sleeping more than normal, by going to bed earlier or waking up later. Some started having daytime naps because they felt an urgent need to close their eyes and rest, or because their night-time sleep was disrupted; these people described feelings of extreme tiredness:
‘I’ve literally pulled my car over, closed my eyes, and gone to sleep, which is unheard of [as] I’ve never found sleep that easy.’ (P03, F, 31–40 years)
Fa:‘You always used to go to bed about half-past 10 didn’t you? But then that got to 8 o’clock didn’t it? … And then just before he was really poorly, come half-past 7 he would say, “I’m going up.”’ (P19, M, 61–70 years)
‘I mean, I was just, well, tired, exhausted … I was feeling absolutely totally shattered.’
(P15, M, 51–60 years)
‘Head feels like …’: ‘I wouldn’t say it’s a headache …’
Many participants felt strange sensations in their heads. Rather than calling them a headache or pain, they were described as feeling ‘muzzy’, ‘fuzzy’, ‘thick’, ‘fluttering’, or ‘coming in a wave’. Some spoke about temporary feelings of dizziness or light-headedness, described as ‘like being drunk’, and ‘giddy’. One patient had experienced such sensations every 2–3 weeks over the preceding year:
‘Not dizziness, not losing balance, not anything to do with your eyes, just literally the sensation of my head doing a little spin.’
(P12, F, 51–60 years)
‘I can only describe it like a sherbet bomb in my head … like that fizz bomb you have in the bath … but not painful, not uncomfortable, not anything … I would lay down and there would be a little bit of fizzing. No big deal, it wouldn’t last forever, but you know, just aware of what a strange sensation that is.’
(P27, F, 71–80 years)
‘I wouldn’t say it’s a headache, but you get like a little pain in the front of your head and it goes just like that. It’s almost like a wave.’
(P34, M, 41–50 years)
‘Head feels like …’: a new or different headache
Many participants spoke about having changing headaches such as new-onset headaches, a headache with increased intensity or duration, or one that felt different from ‘a normal headache’. Some described these headaches as constant or daily. Some spoke about experiencing painful headaches that were severe and unbearable: their pain was described as feeling like pressure, pulsations, piercing, drilling, and fireworks. Some noted they had started taking painkillers regularly:
Fa:‘ ‘Before any of this started, [when] I’ve been getting up for work he’ll say, “God, I’ve got a terrific headache”, which … you never get headaches do you?’ (P30, M, F, 71–80 years)
‘Very piercing … they would shoot across the back of [my] head or across [my] forehead … I could stand there, I hadn’t got a headache, all of a sudden, it was like somebody had put a needle in [my] head.’
(P13, F, 31–40 years)
‘That was a pretty extreme headache because I don’t get headaches, but if I do, I really don’t normally need a paracetamol just to get through it.’
(P32, M, 71–80 years)
Changes in balance, sensations, and senses: body parts weak or not working
Participants spoke of weakness or numbness in parts of their body, or that body parts ‘just didn’t work’. Some experienced sensations such as pins and needles, tingling, twitching, or shaking in that part of the body, and, for some, this was later recognised as resulting from a seizure:
‘You know if you have a really dead arm, and then the feeling comes back, and it sort of prickles and it stings rather like stinging nettles, and feels very heavy.’
(P12, F, 51–60 years)
‘I always sat here with a roll-up … I did notice I was dropping it, it was annoying me that I was dropping it.’
(P27, F, 71–80 years)
‘I noticed that I was slurring my words and wasn’t able to say some syllables. When I was leaving a voicemail message on an answer machine, I had to repeat myself to get the thing out.’
(P21, M, 51–60 years)
When these sensations were noticed in upper limbs, some found that they dropped objects or felt clumsy or unable to hold everyday objects. Facial changes could result in dribbling, slurred speech, or difficulty talking. Weaker lower limbs were mainly manifested by slower walking or changes in a person’s ability to drive. Participants noticed changes in balance or becoming unstable. They spoke about leaning to one side, wobbling, staggering, tripping, stumbling, hovering, and sometimes falling:
Fa:‘ ‘I noticed it because you were walking around as if you was about 90 years old, you sort of like hunched over and your legs were really slow and you were just wobbly the whole time.’
P:‘Yes. I could hear my foot drag along the ground.’ (P16, M, 61–70 years)
‘I didn’t fall over, I was just a little bit unsteady. I can walk normally but not on a line, you know like when a policeman wants you to walk on a line for being tiddly? I couldn’t do that.’
(P11, M, 71–80 years)
Changes in balance, sensations, and senses: changes in vision
Some participants noticed that their eyesight or ability to focus deteriorated, experiencing blurred or double vision (sometimes intermittently), or were squinting or straining to see. For others, their field of vision was reduced, and a few participants spoke about experiencing a tic in their eye:
‘You know when you’re dreaming and it’s hazy or like you can’t see properly, it’s like that … like a blur … It’s more cloudy, like a mist comes over my eyes.’ (P06, 31–40 years)
P:‘I was drifting to the left all the time.’
Fa:‘ ‘He were driving right close to other cars that were parked or anything that’s this side … so I had to keep telling him to go back to the middle of the road.’ (P17, M, 61–70 years)
Changes in balance, sensations, and senses: changes in hearing
A few participants experienced sensitivity to noise:
‘If the kids make a noise upstairs I haven’t been able to handle it very well, so I’ve noticed a big increase in sensitivity to the light and the noise … everything was just heightened, the dog barking and things like that it would make me very irritable.’
(P03, F, 31–40 years)
Others felt their hearing was compromised, predominantly on one side, as if the sound was muffled or their ear was wrapped in cotton wool. Such changes meant that these people were straining to hear, asking people to repeat what they were saying or lip reading:
‘I found myself kind of turning to hear with my good ear and things like that … when my colleague speaks to me … she’s further into the room … I have to really try and lip read what she’s saying. I can still hear but just not very well.’
(P23, F, 21–30 years)
Changes in balance, sensations, and senses: changes in taste or smell
A few participants spoke about a metallic smell or taste that was particularly strong at times. This was sometimes subsequently attributed to a seizure:
‘I had had this funny smell … I don’t know if it’s a bit metal-y or a bit fuel-y, maybe workshop-y I suppose.’
(P07, F, 31–40 years)
Change in person: ‘out of character’
Participants and family members compared recent moods, attitudes, or behaviours with how the patient had previously been. Participants mostly knew they were ‘out of character’; some had been apologetic for their change, or articulated that they did not know why they were acting in a different manner. A number of personality or emotional changes were mentioned, including becoming more irritable, angry, anxious, overwhelmed, or sensitive than normal:
‘Not being as tolerant and as thoughtful and as considerate as I would probably expect myself to have been … I thought I was being totally irrational and not reasonable, and unfair and unkind.’
(P02, M, 51–60 years)
Other changes included lack of social inhibitions or change in social interactions:
Fa:‘It was subtle changes in his personality where he was a little bit inappropriate. And I’ve never had to worry about that, you know, I mean he can be quite outrageous when he’s being funny, but it’s within the realms of absolutely fine. And then I started to worry about what he was going to say, who he was going to wind up, yeah, just how far he might go.’ (P20, M, 71–80 years)
Some were aware of a sense of lethargy that they had not had in the past, describing lack of motivation or lack of interest, and commonly using the phrase ‘just can’t be bothered’ about work and hobbies.
Not all seizures are the same or come ‘out of the blue’
Not all seizures were the same: they differed between participants and over time. Participants spoke of experiences that were ‘out of the norm’ and unwanted, yet still ‘understandable’ such as having déjà vu, panic attacks, sleepwalking, or intrusive daydreams.
Participants explained their symptoms as a ‘simple’ response to being tired, over-exercising, or not eating. Symptoms that were more intrusive led some participants and their family members to think they were experiencing a stroke.
People experiencing a seizure often did not seek help initially, and the timing of the decision to seek help was often driven by a seizure involving a collapse. However, not all patients collapsed, and some chose to visit their GP rather than the emergency department for seizure symptoms:
‘I would feel, “Ooh, that’s a bit strange”, I’m just overtired or there’s been a little reaction and it just didn’t seem to make sense … They were so spasmodic then that it was easy to put it down to just being over-tired and a bit overwrought at work, really.’
(P02, M, 51–60 years)
‘I thought it was like panic attacks … It started off with little twitches and obviously, you don’t really pay attention but now they’re getting like my arm will flare up, my leg will twitch up that way.’
(P06, F, 31–40 years)
‘I just thought they were intrusive daydreams or funny repetitive thoughts … it was that déjà vu sort of thing … I just thought this must be some weird baby brain.’
(P07, F, 31–40 years)
Quality of patient–GP communication
Patients spoke about the considerable consequences of subtle differences in discourse during GP consultations and these were reflected in the patients’, carers’, and GPs’ suggestions for how to improve GP consultations to reduce missed diagnostic opportunities (Box 1).
Box 1. Workshop participants’ views on how to improve GP consultations to reduce missed diagnostic opportunities
| 1 | Ten-minute appointments or ‘one symptom per appointment’ are not sufficient to share subtle, intermittent changes or symptoms, and can lead to selective or limited disclosure. |
| 2 | Vague symptoms need thorough exploration by family doctors. Take a good history from family and friends if not forthcoming from the patient as patients may not notice all the symptoms themselves. |
| 3 | Improve how patients present their symptoms in the consultation (for example, encourage patients to bring written lists of symptoms, track multiple symptoms, and voice any concerns). |
| 4 | Aim at continuity of care so that GPs can have increased awareness of symptom changes over time. |
| 5 | Encourage follow-up appointments by making them before a patient leaves the surgery or giving a time limit for symptoms to resolve. |
| 6 | Empower patients to return if they think something is wrong or if they are unhappy with the plan. |
| 7 | Identify patients with repeated consultations with vague symptoms and have lower threshold for referral based on GP intuition. |
| 8 | When ordering investigations, most patients would rather be told that cancer is a differential diagnosis. |
Selective or limited disclosure
Patients discussed some of the changes or symptoms with their GP, but often failed to mention all the changes they had noticed because they forgot, or were reluctant to give more details, or found the consultation too short. Some noted that they were uncertain about which changes were important to discuss:
‘What did I tell him … I was feeling really lousy and what have you … at that point I didn’t actually say I’ve just crashed the car through … I didn’t.’ (P27, F, 71–80 years)
Fa:‘You don’t know what information to offer the doctor because you don’t know what’s relevant and what isn’t. So for [patient] to go and not know, you needed someone to ask the leading questions … and then put a picture together for you. Rather than just sit there.’ (P26, F, 41–50 years)
Conversely, some patients were prompted by their GP to reveal more details, which, in turn, could lead to a decision to refer the patient for further investigations:
‘I said, “I’ve got a migraine” and that was it, that was pretty much all the information I was willing to give and then he said, “OK, well what else has been going on?” And then he made me go through the past 4 weeks like what you did and then got me to describe the migraine in detail and prompted as well.’
(P36, F, 21–30 years)
Alignment of views
Patients generally attended their GP with ideas about the cause of their symptoms. Sometimes patients felt disappointed when they were told nothing was ‘wrong’ yet they continued to experience symptoms, and spoke of believing they had been ‘fobbed off’ or ‘brushed off’. In some cases, the GP agreed with the patient’s views and subsequent investigations aligned with the patient’s suggestions.
However, GPs disagreed with the patient’s suggestions in many more instances. A brain tumour was not initially considered by the GP or the patient; instead, other diagnoses such as infection (viral, or ear, nose, and throat), hormonal changes (thyroid or menopause), eye problems, or mental health issues were considered more likely and investigated first. Once these diagnoses had been ruled out and the patient decided to re-visit their GP, a computed tomography scan was more likely to be arranged during subsequent consultations:
Fa:‘You went to the GP about a month ago and said then that you’d been having these feelings of not feeling right and not being able to articulate your speech and thoughts … He did a preliminary dementia test, because [patient] was worried that he was getting Alzheimer’s.’ (P02, M, 51–60 years)
P:‘I think I felt a bit fobbed off with it really … ‘cos [GP] would just look at you and if something wasn’t physical or if something wasn’t fitting in with what he thinks he just didn’t have anything to do with you.’
Fa:‘You felt like as if you’ve been brushed off.’ (P31, M, 41–50 years)
GP response impacts the patient’s decision to re-consult
When GPs appraised symptoms and gave plausible explanations, patients spoke of feeling reassured; sometimes this gave patients less incentive to re-attend when symptoms continued. If patients felt their symptoms were dismissed or not given attention by the GP, this prompted them to downplay their symptoms and, again, their motivation to re-consult was low:
‘When I said, “Well, still got the headaches”, it didn’t [seem to] matter … So I never went back to my doctors, I just took it that they were saying that the headaches were OK.’
(P05, F, 41–50 years)
‘I was getting to the stage where I thought, well maybe it is just something that will disappear and, you know, they don’t seem too worried about it so I left it for a long time.’
(P23, F, 21–30 years)
Some patients spoke about the GP specifically asking the patient to return, with some booking the appointment for the patient. Others felt that there were missed opportunities to obtain a quicker diagnosis because they were not actively encouraged to re-attend if test results were negative, or symptoms persisted or developed. A few also spoke of long times between appointments, slow or forgotten referrals, or scan results not being reviewed:
‘Well, I just feel [my doctor] should have said, “look, if your eye test comes back clear, come back and we’ll have another look at you, and we’ll investigate it” … But you listen to what your doctor says and because they never said come back … I just feel they just sort of brush you off.’
(P05, F, 41–50 years)
‘You think that if you’d got something that is progressively carrying on over a long period of time that you would get to a stage where you think that you would investigate this a bit more.’
(P31, M, 41–50 years)
‘She said, “Don’t worry about it too much and come back and see me in a little bit,” which is fair enough … She made an appointment for me to come back I think.’
(P07, F, 31–40 years)
‘They didn’t send me to A&E, they sent me to a specific clinic where she’d obviously rung in front, because they were waiting, and a couple of days later, and she only works 2 days a week at the surgery, she actually phoned up [spouse] to check that everything went well. So I suspect when I walked in the door, she knew there was a problem.’
(P32, M, 71–80 years)
