Lung Cancer

Talking to doctors and the care you received

Most of those we interviewed spoke highly of the NHS and said that they had been treated quickly, efficiently and kindly. (See also 'Nursing care'). A few people complained of lack of resources for lung cancer, a shortage of thoracic surgeons, dirty wards, or long waiting times for treatment.

Explains why waiting for treatment was so distressing.

Explains why waiting for treatment was so distressing.

Age at interview: 70
Sex: Male
Age at diagnosis: 69
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Well the two consultants were going to meet as I say New Year's, Christmas Eve, between Christmas and New Year they were going to meet and discuss with I think a radiographer to see if they could get at this cancer which was in a very awkward place and they were going to, or they thought they'd be able to get at it from three different ways. But they would (laughs) let me know, so again I mean that was after the third day that will never die out of my memory the New Year's Eve where I was left up in the air; am I going to get treatment? And then of course a week after I saw the consultant from the radiotherapy unit who came to [the local town] and said they'd had the meeting, they felt they could help. So that was great, and four weeks.

So now you're still waiting now?

I'm still waiting. I'm not a happy person. Psychologically you prepare yourself for four weeks wait. You are very conscious of the fact that this damn thing is growing on my lung and it's getting four weeks head start on any treatment, and when at the end of four weeks nothing happens it starts bringing all sorts of unpleasant memories back again. And I spoke to my GP, said, "What can I do?" rather naively because I don't think there's anything I can do and he said, "Well I'll see what I can do," that was last Friday. He's a good bloke, if he can help he will do. I realise my cancer is no more or less important than the next person, I feel that if I was going to wait six or seven weeks perhaps it would have been better had I been told rather than told four and it's now getting towards six.

She has been treated quickly and kindly and found her oncologist marvellous.

She has been treated quickly and kindly and found her oncologist marvellous.

Age at interview: 46
Sex: Female
Age at diagnosis: 45
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And what's your general view of the National Health Service after all this?

After all this, I wouldn't have a bad word to say about them. I've been treated so quickly, so kindly, I would not have them criticised at all in front of me. They've been absolutely marvellous, absolutely marvellous. With the resources that they've got they're wonderful, absolutely wonderful.

And communication between doctors and patients; has that been good?

It has been so far, so far yes it has, yeah. Dr, my oncologist he is, he's absolutely fantastic, I've never known a doctor like him. He, he does have a clinic but he would rather come and see you whilst you're having your treatment than to drag you back to the hospital, for an appointment. He is, he's marvellous, he is absolutely marvellous. 

His GP has been supportive, the nurses caring and kind, and he found communication with doctors good.

His GP has been supportive, the nurses caring and kind, and he found communication with doctors good.

Age at interview: 54
Sex: Male
Age at diagnosis: 54
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My, my opinion about the NHS has always been positive but my experience with the, the lung tumour has really confirmed that both, well with the, the pneumonia before that as well. You know, my, my GP  has been extremely supportive. All the nursing staff have been very supportive and caring and kind. It, all, all the stereotypes of, the positive stereotypes of the, of the nurse, they've conformed to. And the consultants have been very clear in what they've said, they've been extremely efficient. In the main they haven't accorded with the stereotype of the consultant being this god-like creature who won't answer questions. And, coming from my professional background I, I do tend to notice people's social skills.

Right

And with one exception you know, they've, they've been very good. You know, they've been very engaging and been, been willing to be engaged and they've, they've invited questions. So aside from the fact that there was, there were delays at the beginning about my getting treatment, simply to establish what was wrong, 

Hmm

And I, and I, I actually don't expect doctors and nurses to know everything, I know some people do but I don't because they're human beings, but once the treatment had got started it's been very good indeed. 
 

Some people had reservations about part of their care. For example, a man who several times had cryosurgery as a day patient disliked having post-operative care on the ward where others were having major heart surgery. He felt that the nurses rather ignored him because the other patients needed so much attention.

Coping with a disease such as lung cancer can be difficult and distressing. Difficulties in communicating with health professionals can compound people's problems but many people described excellent communication and said they could not fault their doctors in any way. (See also 'Finding information on lung cancer').

Says doctors have a hard job telling people they are going to die and that the doctors and nurses were excellent.

Says doctors have a hard job telling people they are going to die and that the doctors and nurses were excellent.

Age at interview: 59
Sex: Male
Age at diagnosis: 58
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What about communication with the doctors at the hospital, did they explain things to you?

Excellent, they were excellent, all the way through. I'm personally happy with the whole system, since day one, I cannot I can't fault them, may be. They've got a horrendous job to do, I don't know what these people, what makes these people want to be doctors, especially dealing with people like myself. 'Sorry make you croak and that', I mean how do you tell people that? I think you've got to be a certain type of person. But they are just generally very, very nice, kind, understanding, helpful, I cannot fault them. May be we're lucky down here but I don't know. But from my GP down to the nurses in his surgery, to the nurses at the hospital, and the consultants I can't knock them, I cannot knock them.
 

His doctor communicated extremely well.

His doctor communicated extremely well.

Age at interview: 52
Sex: Male
Age at diagnosis: 50
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What was communication like between you and the doctors?

Communication was quite good. The doctor that came and seen me on a regular basis, he was a Chinese man and he was lovely, his attitude was superb. He, it's very hard to explain how good he was, he didn't leave anything to chance, he explained everything to you and he would reiterate that anything, any question that I wanted to ask to ask him and he even said at one stage, 'If you write them down because sometimes you don't, or get your wife to ask me, because sometimes you don't always remember what you want to  ask'. So he was good and he also, as I said before, the worst part was bringing this spittle up and he was underlining the fact that this was so important to me, getting well and he would say like "Spit for England," and things like that. And I laughed at that stage, and said "Well definitely not for England," and my wife explained to him that I was Irish. So he was humorous as well, he was very good in communicating; I thought that he was a lovely man. So as far as communicating with the doctor was concerned that was very easy, he was very easy to approach.

Others, however, would have liked more information and said that lack of understanding and dissatisfaction was partly caused by the doctors' language, jargon and medical terminology. One man thought that his surgeon was unrealistically positive about his recovery.

The consultant communicated poorly and talked in jargon.

The consultant communicated poorly and talked in jargon.

Age at interview: 56
Sex: Male
Age at diagnosis: 42
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Also, I was trying to get some information from them, which I was desperate for, I kept asking questions all the time. But the hospital to me, you were like the proverbial piece of meat, what knowledge they had they were keeping and you didn't need to know. And they'd come round your bed and the consultant would be talking in this jargon, which was all alien to me and then they'd just turn to you and say 'This is what we're going to do,' you know. And you got to know nothing at all, and you had no say in whatever went on, they decided that you know.

He would like to know why the operation caused his breathing problems but he doesn't understand the consultant's language.

He would like to know why the operation caused his breathing problems but he doesn't understand the consultant's language.

Age at interview: 66
Sex: Male
Age at diagnosis: 64
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Well somebody, all I've been told now is that I've got a lymph node which I don't know what, I don't know what a lymph node is. I'm not very good medically. Some people can ask the questions and they understand the doctor's language but I don't understand the doctor's language, I don't even know what a lymph node is, even though I've had one before, I've never been explained exactly what it is.

Have you tried asking?

I have yes, yes I have asked. I've told the lung cancer nurse actually that that's one of the things we want at the meeting, our support group, and the other people have said the same we want somebody to come with a model, a diagram, or something, or and say, "We've taken that bit of lung away and we've cut that pipe and we've," I'm not morbid, I don't want to know, I wouldn't like to see the operation but I would like to know what they've done to cause the breathing problems, you know. You expect them to take the lung away and not cause you a breathing problem but obviously it does and nobody has really explained that to you. And the same with this cancer now, nobody has shown me a diagram and said that's where your cancer is, they've never actually said that to me.

Right so you'd like a bit more information?

Definitely I'd like a lot more information on that side of it.

Did you ever try asking the doctor, the consultant?

I have, yes I have asked, but whether he's told me in his language and I haven't understood because I'm a bit thick that way inclined I suppose. Perhaps he's told me in his language that I haven't understood but I haven't understood what he's told me, if he has told me I haven't understood it.  
 

He thinks the surgeons were unrealistic about his recovery.

He thinks the surgeons were unrealistic about his recovery.

Age at interview: 66
Sex: Male
Age at diagnosis: 64
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Are there any questions about lung cancer you still want answered that if there were an expert here?

A lot, yes.

What sort of things?

Well I've never been told, as I've said to you before you said, you asked me earlier about what part of your lung I'd had took away, and I've never really been told any details of that operation, I was just told that I'd had the top third of my lung took away and it came away cleanly. But they didn't say, I was never told how it would affect my breathing, nobody, they said to me that, the surgeon said when I first discussed the operation he says, "You'll be back to cleaning your car and doing everything you did do within six weeks," which I wasn't and I still am not now. The breathing side has never, ever, gone back to how it was before I had my operation because I've never been, all the time I've had cancer I've never actually been ill with cancer if you can understand what I mean.  

Communication sometimes appeared to break down completely. For example, one man said that he stormed out of the doctor's office when the doctor seemed to contradict the diagnosis he had been given. He also said that he thought that the doctor was too pessimistic about his condition. On reflection he wondered if communication had broken down partly because the doctor had used technical terms that he did not understand.

At one point doctor-patient communication broke down completely because of misunderstanding and medical terminology.

At one point doctor-patient communication broke down completely because of misunderstanding and medical terminology.

Age at interview: 58
Sex: Male
Age at diagnosis: 55
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How was communication between you and the doctors?

Um' Not too bad actually. I had one problem with one doctor initially before I had my op and I stormed, I stormed out of his office. I mean my son and my daughter could not believe what I'd done. My son said to me, "You can't do that," I said, "Well I've done it," I said, "I just wasn't prepared to talk to him." Because he'd given me what I thought was a totally different diagnosis to what the original specialist had given me. But I think he was just talking a little bit more technical than what I understood. I did meet him again at the hospital later on and he did explain to me that we'd sort of got off on the wrong foot and we sorted all you know our differences out.

Were you upset because you felt he was speaking a language you didn't understand?

No I think it was because he was, originally he was telling me there was more wrong than what, I felt he was telling me there was more wrong than what there really was. And it was like, it was like he'd just hit me on the head with a sledge hammer and I just blew my top. And that's how it affects you to start with you get very; like your emotions are all over the place and you can lose your temper very quickly.

Yeah he just started talking to me a little bit too technical I think and it was words that I just did not understand, words I'd never even heard of before. And this is one of the problems. I think they need to be very, doctors and consultants need to be very basic with the patients. I mean we're not doctors, we don't know do we, we only know how we feel. So if they can explain it in more layman's terms the better it is.
 

One woman noted that patients often say they want to know everything about their illness, but are not comfortable with 'uncertainty'. She said that doctors should not patronise their patients and that most people can understand statistics if they are explained. However, it's hard for doctors because people want to hear the good news and not the bad news.

Says it is difficult for doctors because people can't deal with 'uncertainty' and want good news but not bad news.

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Says it is difficult for doctors because people can't deal with 'uncertainty' and want good news but not bad news.

Age at interview: 55
Sex: Female
Age at diagnosis: 55
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I think it's very hard because I think most people don't want to know that they [doctors] don't know. 

Doctoring is very hard because actually what they [doctors] need to do is they need to assess the people that they're talking to and some people want to know everything, or think they want to know, that's the problem you don't always want to know. You want to know if it's good and not if it's bad. I don't think it's very comforting for most people to be told, "I'm a doctor, I don't know," is it? I mean I don't mind that, I mean you work that out for yourself when they say it could be days, it could be years [before death], you think well you don't know and they don't, of course they don't because nobody does. 

Try not to sort of patronise I suppose. I mean most people can understand statistics if you explain it to them and can understand that they're part of a distribution of possibilities. Whether, whether people want to be told that if you're, you know well I'm sure they don't, they only want to be told that they're the good ones and not the bad ones. I don't know what the answer is, I really don't.   
 

A man, who after surgery found it hard to speak (because nerves had been damaged), recalled a day in hospital when a registrar asked him how he felt but hurried on without waiting for the reply. 

A woman remembered the day she had her MRI scan. She had been terrified when the doctors spoke to each other about her scans without explaining to her what they were saying. Listening to them she thought her cancer had spread all over her body.

When doctors looked at her scans they did not explain anything and she thought her cancer had spread.

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When doctors looked at her scans they did not explain anything and she thought her cancer had spread.

Age at interview: 59
Sex: Female
Age at diagnosis: 56
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Going back to when they told me it were lung cancer and MRI scan, they put my MRI scan on a screen, and there were two doctors there at this particular time, and they kept' they never said anything and they were counting, and it goes, one, two, and they're pointing to all these places in my body, and they reach fifteen. And I says to them, 'Just a minute', I says, 'Has this cancer spread to fifteen places?' I said, 'Because I'm sat here terrified'. 'Oh no, just you' don't take any notice of what we're saying. We're just seeing where ..' I presumed, blood vessels were. And I'm sat there terrified and it's going from one to fifteen. 

Did they ever say any more about what they were doing?

No, no not at all. I presumed that they were counting to see where, either they were going to operate and they were counting blood vessels or' Because I did hear them say, 'That's the main one there'. But at first, when it were going from one, they were just saying one, two, and I'm sat there looking at this scan, well there's a lot of different ones, you know, on wall, along this' and I'm thinking, 'Well, it's spread' (laughs).

So you would have liked more information?

If they'd had just said, 'We've got these scans here, and we're looking to find out, to find out' the operation, to see where blood vessels, or veins, I don't'. arteries are, you know, just take no notice of what we're saying. It's got, you know, don't worry about anything', but they didn't, and I'm sat there terrified because these numbers are just going up, and I'm thinking, 'God, it's spread this quick' (laughs).

One man considered that most of his treatment had been good but had found it difficult to get a 'foreign' nurse to understand that he had run out of morphine for his self-administered pump.

He had difficulty in communicating with a 'foreign' nurse when he needed more morphine for his pain.

He had difficulty in communicating with a 'foreign' nurse when he needed more morphine for his pain.

Age at interview: 66
Sex: Male
Age at diagnosis: 64
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There was one time when I was in quite severe pain and I asked, I was taking morphine and it's self administered the morphine is, it's probably the second day after the operation, and you're in quite a bit of pain. And it's self administered, and the thing had run out, and I was in quite a of pain, and I was asking, not particularly because it was the foreign nurse but it was a foreign nurse I was asking, and I had quite a job to make them understand that I'd run out of morphine. And it took me a hell of a long time to get this thing refilled with morphine and I was suffering quite a bit of pain after my operation. But there's a lot of aspects of it, I think probably the good side makes up for a lot of the bad side of it, the down side of it. I think you have a lot of good side. As I say more so since I've been involved with the support group I've found the good side of it. 

A few people praised the care they had received in hospital, but thought that aftercare was lacking. One man said that after he had been discharged from hospital he felt a little isolated. However, others described excellent aftercare, and recalled the wonderful support they received from nurses and from others once they arrived home (see 'Nursing care' and 'Support').

She found the clinical care marvellous but did not receive enough support after her operation.

She found the clinical care marvellous but did not receive enough support after her operation.

Age at interview: 53
Sex: Female
Age at diagnosis: 50
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What's your view of the National Health Service after all this?

The National Health Service I think has been absolutely brilliant, I can't fault them before or during my operation, I thought they were absolutely marvellous, but after the operation I think they're sadly lacking. I don't think there's enough care given to people afterwards. They've done, as far as, it's just the way their attitude is, we've diagnosed the problem, we're removing the problem, now get on with your life and that's, that's not right, you should get support afterwards. That area they're sadly lacking in I think.

He received plenty of information until he left hospital but now feels a bit isolated.

He received plenty of information until he left hospital but now feels a bit isolated.

Age at interview: 54
Sex: Male
Age at diagnosis: 53
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When I first became ill I went to a local hospital the, we were kept in touch with everything that was going on all the time, we knew exactly what they were doing, what they were looking for, what they'd found, it was really good. When I transferred to have my biopsy that perhaps wasn't quite so good but certainly when they'd diagnosed me the surgeon actually phoned me up at home and gave me some information, and then asked me to go in to see him, to give me all the information on that. When we went to the hospital to have the surgery the extra pleural pneumonectomy then it was absolutely brilliant. The nurses on the ward, because it was a specialist thoracic ward, the nurses seemed to know as much as the doctors. There was a doctor on the ward twenty four hours a day and there was, they never, well it was never too much trouble for them to sit with you and explain what was going on. Now since I've been discharged it's, we've felt a bit isolated.  

Last reviewed May 2016.

Last updated May 2012.

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