Lung Cancer
Finding Information on lung cancer
People diagnosed with any cancer want some information about their condition and what is going to happen.
Information requirements fluctuate during the course of patients' experience of cancer. At times patients may not want detailed information because they feel frightened of finding out something bad, and they may be afraid of jumping to the wrong conclusions. Also they may want to avoid being labelled a 'clever dick'. Health professionals need to discuss with patients what kind of information they want and then should direct them to reliable sources.
Many of the patients interviewed here said that they trusted their doctors and wanted no further information. Some said that a little information was a dangerous thing and that more information would be frightening or depressing.
Has great faith in his doctors and has not searched much for information.
Has great faith in his doctors and has not searched much for information.
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No I've got no access to the internet. I don't think I can set the video, so I don't think I can get on the internet too well. Basically, I looked at a couple of things but then I've got that much faith in my doctors and the doctors at the hospital that I don't think it's necessary. I don't, that's me, I'm probably lazy... I've got one hundred percent faith in my doctors, just, I don't think there's need for running around. There was a little thing the other day come up on Radio Four which they thought was thalidomide was now in, they're having tests on that for lung cancer but we did have a little look at that but I think it's still in the early stages yet being tested. But that's about all.
Some people were adamant that they got all the information that they needed from the Macmillan nurses, nurse specialists or doctors at the hospital. One woman, for example, said that everything had been explained very thoroughly.
He had plenty of information from doctors and nurses and thought any more information would be ...
He had plenty of information from doctors and nurses and thought any more information would be ...
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No, not really no because the information actually in the Macmillan book is very, very concise. You don't really want to read any more about it because honestly it's a downer. I finished that book and I was crying when I finished it... I said "Oh what the heck did I read that for because it's just put me on a downer and I don't want to be on a downer thank you very much indeed."
A bit pessimistic is it?
Well I personally think so anyway... Well, while I was in the ward there's this guy just been diagnosed, and I knew he'd just been diagnosed because you could see it on his face. His wife was there as well, and his face was just, oh, how can you put it, drawn, literally drawn, he was white, he was drawn.
So you didn't feel tempted to look at the Internet or anything like that?
No not at all, not at all. No, the thing is if I'd have needed any information I could ask the Macmillan Nurses or I could ask the people on the ward, I cannot fault them for that or the doctors even, I cannot fault them for that.
If I wanted anything all I had to do was ask, and you're told that all the way through your treatment, "If you want anything you phone us up," they give you all the telephone numbers, you've got the Macmillan telephone, Macmillan nurse telephone numbers, you've got the ward, there's two wards, one which works Monday to Friday and the other one works all the time. The one I normally went to was the one that works Monday to Friday. You got those numbers, you've got social security numbers, you've got all the telephone numbers. So you've got all that information, there's so much information that to try and get any more would be overload, seriously it would be overload.
He got all the information he needed via the nurses, who were 'brilliant'.
He got all the information he needed via the nurses, who were 'brilliant'.
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No I didn't know anything at all. Just basically what I'd heard on television or read about. I didn't know too much details, I didn't even know there was different sorts of lung cancer.
And were you given information at the hospital?
Yeah more so from the lung cancer nurses, they were absolutely brilliant. There were two specific nurses at our hospital and you're allocated a nurse. The girl I was allocated was absolutely brilliant, she went into all details, any questions I had I could talk to her about. She gave me a card with her own telephone number on at the hospital and if I needed to speak to her any time I just rang this number and she would get back to me straight away virtually. Very good indeed.
Did you go searching yourself on the internet?
No I didn't to be honest with you. No, I'm not much of a computer buff although my daughter is, so I didn't look too much into it. I suppose to a certain extent you don't really want to know too much about it, although I know a lot more now than what I've ever known about it. But no you don't, that was me personally I didn't want to know too much about it, yeah.
Says everything was thoroughly and well explained before her treatment.
Says everything was thoroughly and well explained before her treatment.
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Did you feel you had a chance to ask questions when you were with the doctors?
Oh yes, yes I did ask them questions and they were very, very clear explaining everything to me.
Others said, however, that they would have liked more information, and one man thought that he had received information too late. Another man, diagnosed some time ago, recalled that he obtained inspiration and information mainly from another patient, and after talking with other patients more recently he thought that little had changed.
Says that he would have liked to have some information before his operation.
Says that he would have liked to have some information before his operation.
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Yeah the the feelings I had really was I think it was just depression. I was very, very depressed, and every time I thought about the cancer I cried. And I cried a lot in the four months before my operation. I used to, I couldn't stand people talking to me about it because it upset me that much. Every time somebody spoke about it I started crying, I filled up and I felt like crying all the time. And by the time I came for my operation I was in quite a bad state. And when I went into hospital for my operation there was a Macmillan nurse in the hospital where I had my operation and she came to see me. And that was the first contact I'd had with a Macmillan nurse or with anybody. And she really did help me get through my operation. She talked to me and explained things to me. Up until then nobody had explained to me, in any detail, of what was going to happen to me, they just said they was going to take part or all of my lung away, they didn't say anything at all about the operation, how the operation would be carried out. And then I had the operation.
Were you given any leaflets or anything like that about it?
I was given one leaflet; no I wasn't given any leaflets until I came out of the hospital. I wasn't even given any leaflets at all beforehand; it was when I came out of the hospital after the operation that I was given some small bits of paper that didn't give you a lot of information at all.
Thinks that although patients get more information now than in the past there is still not enough...
Thinks that although patients get more information now than in the past there is still not enough...
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So things haven't improved?
Things haven't improved at all. I mean ... there are plenty of stories like that. They [patients] are given more information now, you know sort of leaflets etc, but you find basically nothing's really changed at all. It's just a lack of information, that patients need.
Do you find some of the people you know use the Internet for information?
No, I don't, I don't really because I, the majority of the patients are well into middle-age as I see, and computers and stuff like that is a thing just, they're not gonna touch. Maybe, I do know quite a few of them get their children to have a look for them, but they don't, no.
A few people, particularly those with easy access to computers, found the Internet invaluable for finding information about symptoms, treatments and support organisations. One man had obtained information from various websites, and through his computer had regular contact with experts in other parts of the world. His research on the Internet influenced his treatment decisions. Someone else explored other treatment options on the Internet.
He became an 'expert' on lung cancer mainly through the Internet.
He became an 'expert' on lung cancer mainly through the Internet.
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By the time I had my surgery I was probably an expert on (laughs) on lung cancer. Exclusively on the net basically, I downloaded loads of different stuff from the net. As well as through the cancer team, who give you loads of information if you ask them. Obviously in some cases they won't offer, so unless you actually know what questions you want to ask, the information wouldn't be offered. And I don't think that's a conspiracy theory kind of thing, I think the reasons for that are probably you know, manifold it could be for any reason. It depends on the level of technicality that you want to get into. I mean obviously it's a very specialised subject, so if you're dealing with well any part of it, whether it be the treatment or the actual workings of lung cancer or the surgery then there are, you can access it at many different levels, and depending on the type of questions you ask would very much depend on the type of answers you'd get. So, I mean for us it was, we just downloaded everything, even down to looking at procedures on the net, accessing medical websites and exploring alternates for treatment.
One man had difficulty speaking after his lobectomy. He found it extraordinarily helpful to have the Internet to communicate with friends and strangers, and through various websites he found out exactly what was going to happen during his thyroplasty operation (a procedure for altering the structure of the larynx to change vocal quality).
He found the Internet invaluable for getting information and for contact with other people.
He found the Internet invaluable for getting information and for contact with other people.
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Yes, yes most definitely and much of the good information on it comes from the States and it's instantly accessible, it's brilliant. I was, there was an amusing incident when I went for the thyroplasty and the young doctor was explaining to me what the operation was and the diagram he showed me was so primitive compared to what I'd found on the Internet of colour, 3D representations of exactly what was going to happen. It's an absolutely invaluable tool. It's not everyone's cup of tea, not everybody wants to know the ins and outs; personally I'm far too nosy to let it pass, yes.
Would you recommend any particular websites to other people?
The Roy Castle web site is very informative and it has links which will send you off in different directions, and the Macmillan Nursing is an interesting website. But then the ones from the States, you just put in cancer on a search engine and get thousands and just fish through them, they're extraordinary. And there's advice, dietary advice, post op, and all these kind of things, there's lots of things, lots of information there yes.
Were you given any dietary advice post op?
I can't remember.
Did you did you search for information through books as well or mainly the Internet?
No I couldn't, you couldn't read immediately post op the effect of the anaesthetic you find words are moving off the page. I'm a bit of a lazy reader to be honest with you.
So the Internet was the best?
Yes, yes, yes and particularly nowadays it's so quick and easy to use yes. Yes it's been a great source of information and entertainment and all sorts. I mean when I had trouble speaking to be able to chat with people on the Internet was extraordinary, for friends and strangers yes.
Doctors and nurses sometimes warn patients that many websites are unregulated and may be misleading. However, one man explained that his wife and daughter found the Internet extremely useful, particularly when looking for the symptoms of mesothelioma.
Explains why he has not searched the Internet for information.
Explains why he has not searched the Internet for information.
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No, I, I didn't and, again because my current professional background, finding things out is what I do. But in fact I was given some advice by the lung nurse specialist about being very careful about doing that because the quality of information is often very variable. There are some very good sources but there are also some not so good ones and also, yeah, it's important to keep yourself not only physically strong but I think psychologically strong. One, I mean, one of the things that is sustaining me is that a lot of the statistical information that you get deals in averages
Hmm
And actually different sorts of averages. I mean, I think people don't understand sometimes that there are means, you know, there's a mean, there's a median and so on. And so when somebody's told something like the average life expectancy with this condition is 4 years, what they hear is, 'I've got 4 years to live'. They might actually have less but they could also have more and the more or less depends, at least to some extent, on them. And you know, being prepared to, manage the illness and being prepared to as, as far as you can, control it. You know, that, and that, that's easier said than done, and that will vary a lot from person to person, the extent to which they can do that, feel able to do that. I, I certainly acknowledge that will vary a lot.
Hmm
But I actually haven't gone to any websites and I, I probably won't, other than people talking about their own experience because a lot of the statistical information it, it just talks in average and, well nobody's average.
His wife found the Internet useful, particularly when looking for the symptoms of mesothelioma.
His wife found the Internet useful, particularly when looking for the symptoms of mesothelioma.
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Some people, particularly the elderly, did not have access to the Internet themselves. Others said they were 'not computer fans', or were unaware of information on the Internet, but some had children or other relatives who used it.
Today, patients are often given booklets or leaflets about investigations, treatments and other aspects of their illness. Many people found these helpful. Some people also found information in their public libraries.
Says he was fully informed at every stage and received leaflets or booklets on all procedures.
Says he was fully informed at every stage and received leaflets or booklets on all procedures.
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I was given information on the treatment of radiotherapy, I was given information on, from the hospital I was given an information sheet on a bronchoscopy, I was given an information sheet on a CT scan, I was given information sheets on radiotherapy, and what it can do, and any reactions you have and everything else. All given so I have been fully informed of what things are, right the way, every process, I've been given documentation. Even to the lung operation I was given a booklet on the after effects and how this works and that works and everything else. Nothing has been kept from me at all.
A few people were upset by programmes or adverts about lung cancer on television (see 'Feelings of stigma, shame and guilt about having lung cancer'), or when they read about lung cancer in the newspapers.
For more information sources see our Resources page.
Last reviewed May 2016.
Last updated May 2012.
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