Cancer (young people)
Finding information and good information sources on cancer
Young people who are newly diagnosed with cancer may not know much about it, especially as cancer is a disease which normally affects much older people. It can also be very hard for people to take in information or even begin to think of possible questions to ask because they may feel dazed, confused, and anxious about the diagnosis.
Doctors and nurses want to make sure that young people understand their illness and the treatments involved, as well as possible side effects. This communication is essential so that young people can formally agree (consent) to treatment. Consenting to treatment usually includes signing a document saying that they understand what is going to happen during treatment and agree to have it. The legal age for consent for medical treatment is 16, so sometimes if the young person is under 16, their parents or carer will need to agree on their behalf, so they too will need to understand everything that is going to happen.
Normally, explanations about the treatment plan comes from the hospital staff involved in the treatment, including radiographers, nurses, surgeons and anaesthetists. The young people we interviewed remembered this part as being difficult. Treatment plan explanations included being told about side effects such as fertility issues (see 'Concerns about fertility after treatment’) or being told about what might go wrong with surgery, which, not surprisingly, not everyone wanted to hear about!
Was terrified when told by junior doctors about possible complications of her surgery and really...
Was terrified when told by junior doctors about possible complications of her surgery and really...
And it was so silly; we should have said something. Another boy who had cancer in the same place and was in hospital at the same time adked to see the surgeon, who said 'Oh for heaven's sake, we have done this operation thousands of times, we'll just have to say that'. I so, so wish that we had asked to see the surgeon who was going to do this operation and knew all about it and been reassured too. That's is a bit of a regret.
(The text has been altered in accordance with the wishes of Interview 13.)
A doll was used to demonstrate what was involved in having a tube inserted into his body called a...
A doll was used to demonstrate what was involved in having a tube inserted into his body called a...
Yeah they told me everything that was going to happen, they didn't try and pull the wool over my eyes about anything. I was told basically exactly how I was going to feel and that I was going to have to have a Hickman line put in which is like a central line which goes in to the heart and feeds chemotherapy in to the blood, bloodstream. I was even shown a demonstration of that using, using a plastic doll [chuckles] and that actually sort of brought it home and sort of, I think that's when I broke down and just couldn't take any more. But, because it all looks quite horrific when you sort of see this, this line going in to a plastic doll and think “Oh my God, that's going to be me” [chuckles].
But no they, they told me everything that was going to happen, how I was going to feel, what the treatment would, would do to me physically and exactly you know how I was going to have to be careful of certain situations that you wouldn't normally have to be careful of like going shopping and stuff because of the, you know how easy it is to catch illnesses when, when you're having chemotherapy because you don't have any, really you don't have any white blood cells left so you can't really fight infection too well.
Do you think that they gave you too much information at that point or?
It was a little bit too much at once, maybe they should you know for someone who is 11 and has just been diagnosed it's a, the information and the emotional stress all, all at once is a little bit, a little bit too much to take, but I, I think they did the right thing in telling me everything.
What was frequently helpful to the young people we talked to was that they both liked and trusted their consultants, but even then, most found that it was much easier to raise questions that they had with their nurses rather than with their consultants. Therefore, it is not surprising that nurses on teenage cancer wards were often described as being 'more like friends than hospital staff'. Doctors were recognised as being 'good at giving accurate technical explanations' but were also less available than nurses, and sometimes seemed to be too rushed and too busy to answer questions. Another common problem seen was that junior doctors tended to change posts every 6 months, meaning that it could be difficult to get to know and be comfortable with them.
Describes being able to communicate easily with his doctors and nurses in the teenage unit.
Describes being able to communicate easily with his doctors and nurses in the teenage unit.
Well all the doctors and nurses I had were great. Especially my consultant at my, at the, the hospital I was like through my transplant and stuff, he was amazing. He was like, I was in the kids unit but he understood that I was a teenager and that I was at the point where I, you just needed to be told like what was going on, what will happen, what could happen and not try and sugar-coat it, and he was good at that, he was quite blunt some of the time, but it worked for us, it was like what we needed to know. And if he said, 'This won't work, you need to do this,' that's what we'd do. So we had, we had total faith in him, like he knew what he was doing and stuff so.
And all my, all my nurses were, were great, I still see them sometimes, like I go back and see them and all the staff like and the nurses that I had at the teenage unit as well, they were amazing, they actually you, you can tell the difference between a teenage unit and a children's unit.
A teenage unit they weren't wearing uniforms and stuff like this, so they would, they don't feel like they, they were nurses, they felt like, because you got to know them as friends, they felt, you felt like they were just friends who knew what they were doing like and they were just giving you medicine and stuff like this. So yeah, the staff were, were great everywhere, every, every hospital I was in they were great.
Describes how a doctor gave her a leaflet on lymphoma, and explained which bits were 'out of date...
Describes how a doctor gave her a leaflet on lymphoma, and explained which bits were 'out of date...
Finding information outside of a healthcare setting
The parents of young people with cancer sometimes try to filter bits of 'bad’ information before giving it to their children, so as to make sure that they do not hear anything too disturbing. However, filtering this information may not always be good a thing, in spite of the fact that parents are doing so with the intention of protecting their children. It can be hard for parents to accept that they can’t protect their child from the disease.
Some parents and carers concentrated on trying to finding out as much information as they could from books, journals, websites, and cancer support organisations, as well as asking hospital staff numerous questions.
She felt too tired to find information about her treatment but her mother asked lots questions...
She felt too tired to find information about her treatment but her mother asked lots questions...
I didn't at all. I don't know if Mum did. Certainly she asked a lots of questions and describes herself as the Mother from Hell for the doctors. She was always the one that was making sure that I was having the best possible treatments.
They had a trial going on when I first started my chemo that looked at giving it more intensively over a shorter period. We decided that I would take part in the trial but you were randomly assigned to either the short or long course and I actually ended up on the course that had been established for a while, with the longer periods in between sessions.
Mum was always making sure she knew exactly what was going on and why they were doing things whereas I was just too tired to be honest' I just didn't have the energy to ask questions. And, I suppose, I kind of felt that Mum was doing that bit, the doctors are doing their bit and I should concentrate on just getting through it all.
(The text has been altered in accordance with the wishes of Interview 13.)
Most people can find an enormous amount of information about their cancer online if they want to, but some people may be anxious about finding out things they would rather not know and so do not ask questions or look for information themselves. On occasion, some doctors or nurses warned their patients that they might find misleading or out of date information on the Internet, but also did not recommend other more reliable sources.
A mother who looked on the internet wished she hadn't because she was frightened by what she saw.
A mother who looked on the internet wished she hadn't because she was frightened by what she saw.
Mother: I actually went on the internet and it was quite frightening actually. In fact I wish I hadn't gone on there [laughs].
Really?
Mother: No, this is why I didn't really want to do it, so.
Can you tell me a little bit about it?
Mother: Well actually the, the community nurse sort of said to me about it, and she actually advised you not to go on it but it sort of, it doesn't actually, sort of when you actually put in about brain tumours it's, you're going all over the world and that, and sort of like the information that they give you then, the information what's coming from the internet is totally different.
Like there was actually one person what had had a brain tumour and it was twenty five years later got another one. Well we sort of thought after five years if everything was all right then that'd be it then, do you know what I mean they did actually tell us that she will have to be scanned for the rest of her life. But you, it was quite frightening and you sort of think to yourself, do you know what I mean, they could be all right for so many years and then suddenly it do come back, so I wish I hadn't gone on there tell you the truth [laughs].
Well I wish really and truly that the information that the doctors gave you, that sort of, you could read just what they sort of told you then. But instead of, they sort of gave you more and it was quite frightening.
Was a lot of kind of scary'?
Mother: Yeah. And sort of like every, like then, like all the departments that you went through, sort of somebody told you something extra and it was, it was sort of frightening. Do you know what I mean? Like really and truly I wish I hadn't gone on there and looked [laughs].
It would make you upset?
Mother: Well I wouldn't say it makes you upset, it's, it's frightening more than anything, do you know what I mean, and it, it's your daughter and it could be happening to you sort of thing, so yeah it's more frightening that sort of upsetting.
Several young people we spoke with said that they did not want to look at sources if they were 'aimed at doctors' or if they contained a large number of statistics. Others simply felt too ill or exhausted to read or look through sources themselves but were very pleased if their parents or friends found information for them.
All her family (except her Mum) had looked at the Internet. She herself prefers sites specifically aimed at patients rather than those with 'cold' information about statistics and survival rates.
All her family (except her Mum) had looked at the Internet. She herself prefers sites specifically aimed at patients rather than those with 'cold' information about statistics and survival rates.
Well unfortunately my Mum doesn't know how to use computers so my mum doesn't use the internet. I've personally used the internet a lot and so has my dad and the rest of my family and friends and stuff. If they wanted to find out about some of the treatments and stuff, I know that they've looked on the internet so that can be very useful. The only problem is lots of the sites are aimed towards doctors and not patients so they can be very cold in their just churning out facts to do with survival rates and successfulness of treatments and things like that which isn't necessarily the most productive thing you can be looking at. So when it's more, if you can find a site that's more aimed towards the patient, that talks about, like you said before, about feelings and helping you make decisions on what you want to do and how you want to, to fight what you've got that's better. Because I have read things on the internet that scared me because it can be, you know, just statistics rather than you know. And statistics doesn't always apply to you it's not, because it can't necessarily be personalised. When you just throw out funny numbers it's easily misconstrued and misunderstood to mean that, that necessarily applies to you when obviously it doesn't at all. You can be the one in a million that, that beats it and, and whatever you know. You can be that one person so'
People who liked asking questions or searching for information found that this research was a good way to keep mentally active and found it reassuring to have information about their cancer and what to expect, and felt that they were more involved in their own care. Also, resources such as websites and other recorded or written material can be referred to or looked at again and again, which is especially helpful when information does not sink in the first time.
One young woman we interviewed who had a rare cancer explained that even her doctors had never seen her disease before and had to go away and read up about it before they could treat her. She herself had looked it up and said that 99% of the information that she found about her cancer came from online resources.
Believes that information is important and that the Internet allows you to find out about other...
Believes that information is important and that the Internet allows you to find out about other...
Not particularly, just that it's important that people can find information such as you know, you know your website, I've been on it and it's important. Because not necessarily every time people want to talk to somebody face to face it's hard and to have something that's reliable, a reliable site that they can go on and listen or even, you know, read about people's experiences is a great support because you can, you know, you can relate to certain things in it and, and perhaps what they might be going through, somebody's already written about it. So a bit more relaxed in themselves to know what's to come, if you know what I mean?
Uh hmm.
So I think it's important like because obviously not all sites are reliable, but to have something that you can really think, 'Yeah, well that's, I know that's right,' and they've been there but they don't have to talk to them face to face and perhaps you know, they can sort of step back a bit from themselves and not have to.
Had found it hard to find information about her rare cancer and has not so far been able to make...
Had found it hard to find information about her rare cancer and has not so far been able to make...
Sites, I mean Cancerbackup's very good. Although it's not got directly information about my cancer, the information about cancer, about why you get cancer and things like that are, are good, and it's reliable, you know, the stuff on it is reliable.
I have visited quite a lot of American sites and there's a cancer, the supporters group for the cancer, Cancer Awareness I think it was or something like that. And they're very good, again I've not found anybody that's had the cancer, and I've looked, you know I've left messages and things like that for people to contact me. I've been on to chat with people who perhaps have had cancer at the same age or things like that and I have probably spoke to people on the internet before I was able to speak to somebody in this country face to face that had, had cancer at my age. So that was, that was, that was helpful because I needed to, I needed to speak to somebody and know that I wasn't the only one that was going through it. So that was, they were good.
I also go on, there's a site called, there's a pheochromocytoma is it? And their web page, their web page often deals with adrenal issues, so I've sort of gone on there as a sort of, as a back up plan to try and see if anybody has had it. And that's sort of drawn a blank as well, it's, it's very difficult and I'm constantly trying, trying to see if there's been any updates or anything like that, because a lot of the information on it is old, it's been sited you know sort of, probably eight, ten years ago a lot of it and it hasn't been updated, probably because it's so rare.
So it has been, it's been difficult trying to find information, definitely, and obviously the, the specialists are at a dead end because they can't really offer me a heck of a lot of information, they don't really know what the likelihood of it returning is and it's difficult like that so it's frustrating, it can be, you know. I suppose some people would rather be in the position where they don't want to know and they'd rather know as little about it as possible, but I'm the opposite, I want to know everything and I'd like to, you know, know as much as possible so I've got a good understanding about it.
Although search engines are by far the most common way to find specific information online, some of the young people we interviewed about their cancer pointed out that this is not always the best way to find the most relevant and reliable sites. It was found to be better to stick to more reliable sites such as those recommended in our 'resources and information' section.
Recalls that he found the Cancerbackup website (now merged with Macmillan Cancer Support) very...
Recalls that he found the Cancerbackup website (now merged with Macmillan Cancer Support) very...
Didn't know much about it so myself and my girlfriend went on the internet. Cancerbackup website (now merged with Macmillan Cancer Support) which was very helpful. It explained diagrams, pictures, what CT scans were, what would take place, so that was very helpful, printed all that off. Printed a lot of things off just to give to my Mum more than anything. She was very, very worried, she didn't know anything. I didn't know anything, no one knew anything and we needed something to look at and say right that's going to happen, that could happen, and just a structure of what was going to happen really.
So they hadn't given you any information leaflets at the hospital?
No absolutely nothing. All that came through was just letters and appointments, no leaflets.
Did you find any other websites that were useful?
No we just stuck to one the Cancerbackup which you know for what I needed to know it was ideal.
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