Cancer (young people)
Radiotherapy for cancer in young people
The three main treatments for cancer are radiotherapy, surgery, and chemotherapy depending of a number of different factors. These include the type of cancer, where it is in the body, what the cancer cells look like when examined microscopically, and whether they have spread to other parts of the body.
Radiotherapy works by destroying cancer cells using high-energy radio waves. The way that these radio waves are given are designed to do as little harm as possible to the rest of the body. Before treatment starts, patients have a planning session with their doctor and nurses, so that everyone knows what is going to be involved and how to best cope with any immediate or long term side effects. Some of the people we interviewed described this planning session as just a ’chat’.
Depending on which part of the body is going to be treated, a plastic mask or shield may be made to hold the part of the body having radiotherapy still and make sure the radiotherapy reaches only just the right place. This nearly always happens if the treatment is for a tumour of the head, neck or brain. Patients may also be given tiny skin tattoos to indicate the precise place where the radiotherapy beams will be aimed during treatment. During radiotherapy treatment everyone else (including parents) has to leave the room to make absolutely certain they don’t receive any of the radiotherapy waves. The patient does however remain in constant communication with the staff using an intercom.
Talks about having radiotherapy and describes having a face mask made.
Talks about having radiotherapy and describes having a face mask made.
Well I got back from [hospital] down to here and obviously a few weeks back and forth from the local hospital to just obviously check some things and to discuss how the whole thing was going to go. So I'd guess it was a couple of weeks and then the professor came down again with a whole schedule, the routine of when I was going to have radiotherapy, how long I was going to have it for, whereabouts on my body I was going to have it. So I'd say it was about three weeks and then I started on a Monday because for the radiotherapy, well for my radiotherapy anyway I started on Monday, had it every day until the Friday and had the weekend off of radiotherapy and I had that for six and a half weeks.
Yeah that was [laughs] yeah the first thing you have done when you go down there is not necessarily going to just straight away be the radiotherapy. Dependent on where you're having it they make, they'll make a body cast. For me I had a face mask and about like up to there kind of thing made for me. And what they just, they lay you down [laughs], they pour this freezing cold rubber stuff over you and then they turn, and then they turn you over, do it on your back, absolutely freezing cold and then they chill, obviously they freeze it or something, I don't know what they do to it here I don't know but then it becomes see-through plastic which they use and so they set it up on the machine and they set up specifics. And you get little tattoos on you, they're miniscule ones because the machine uses like light to line you up to make sure at the same time you're always in the same position. So you have like three little indicator tattoos. I can't find my any more but they're there somewhere. So you have them done, you have the face mask and then they, it takes them a couple of days and they line you, so, make sure that every time they put it down it's all lined up and then obviously to them it becomes clockwork because you're in every day. So you have all this preparation done and then they, for your first time they, obviously they reassure you a lot, tell you everything, ask you if you need to be comfortable, if you need anything under your knees or if you're cold or you know.
Who was reassuring you at that time?
Both my parents and the radiotherapy technicians because obviously they're not new to it, they've been doing it for quite some time so they're like you know because at the time, fifteen I'm like, I was probably the youngest patient they'd had there for probably could be, I'm not going to say it's ever but it could've been, 'cos, 'cos I'm tall enough and big enough I was able to use the adult sized you know radio.
Describes having a mask made and feeling uncomfortable during the radiotherapy preparation session.
Describes having a mask made and feeling uncomfortable during the radiotherapy preparation session.
Son: And we met with the doctor and he explained about radiotherapy and how it's done and he was, he was a brilliant doctor he was crazy, he, he really was mad. But -
Mother: He made you feel -
Son: Yeah, really made you feel at ease from the moment when I walked in to the room. I can remember sitting down on the chair and him pulling my trousers leg up and looking at my socks and I had some I forget, some Simpson socks on, he said 'Oh that's okay, you can join the silly sock club with me and he showed me his socks.'
And then after having that we went back, I think another, about a week later and I had to have the mask made for radiotherapy. I can remember having that done, they put this stuff on my face and it was all cold at first, wrapped bandages round my head then with this on and it all went really warm. And then they took that after that because it was set and went back another week or so later and they made this plastic mould of my head and that was kind of scary that was, when you saw that. I was trying to think what film, something I think like Total Recall or something like that in there which was, its scary. And I can remember them to put all sorts of different marks on the mask and that was horrendous because I had to lie down on a bed in this mask for about an hour and a half, face down and I was hot, I was horrible and warm by the end, and I was in tears, my nose was all running and stuff, it was horrid that was.
Because I had to lie down for over an hour and a half to put all these little marks and all sorts on the, on the plastic of the mask to align it with, for when I had radiotherapy and lying down on your stomach for an hour and a half when you're not feeling well anyway is...
Mother: And it was sort of...
Son: Summer.
Mother: Summertime yes.
Son: It was early August so warm as well, it was nasty. But then I started radiotherapy a few days after that and that was, radiotherapy was strange because you, you don't feel anything but then you get the effects of it, the tiredness and your hair falling out.
Describes what happened at his radiotherapy session.
Describes what happened at his radiotherapy session.
Okay, where was the tumour located?
It was in the middle of my head.
And you had to wear that mask?
I, I had a mask making session where they made the mask with plaster of Paris and they made a mask out of that, and then I went for planning where I had to wear the mask for like two hours, on the table where they planned all the lines where they were going to put the rays in to kill the tumour.
So and for, you had to wear that mask?
Every time I went for radiotherapy. I had to lay down face first.
Lay down face?
Lay down face first, I was like that.
Okay.
On the table.
And how often during the week?
Every day except for weekends for five weeks.
About going for radiotherapy? No because all the nurses there explained what was gonna happen and they were with me all through the stages like they were there when you're getting on the table and they said 'are you okay?' and then they left, because they can't be in the room while you're having the radiotherapy. And they could watch on the camera so if you need any help you put your hand up and they would stop and come in. So you've got someone there all the time if you need some help. Just don't be afraid to ask.
So you had the support you needed.
And for how long was the session?
I, it took I think about an hour maybe, no about 20 minutes I was actually on having radiotherapy because they had to line me up but the actual like when they were zapping the tumour took like a couple of minutes.
I see.
Just for three bursts so its just aligning you and getting it in the right place, that takes the time.
Although radiotherapy can be given as the main treatment for cancer, it is often given as an added therapy after surgery or chemotherapy, to prevent recurrence.
His mother explains that they were amazed that radiotherapy could be so successful at treating...
His mother explains that they were amazed that radiotherapy could be so successful at treating...
Is this the germa '?
Son' Germinoma
Mother' Anaplastic germinoma. 'And we would fully expect it to have gone. There'll be a lot of debris left but the actual tumour itself no longer exists.' And we were absolutely amazed. In fact, I think [son] cried [laughing]. He said, 'how can it go so quickly?' He was quite emotional about it and I was just gob smacked, you know, that this big thing, how on earth can it disappear? I mean you can't take it out. But the radiotherapy was so effective, so that was a big, a big day to think that, that tumour now was not the threat that it originally was. You know it was threatening his life and then all of a sudden after 10 sessions that it was dead. So that was quite a celebratory weekend [laughing].
And how were you feeling at that time?
Son' That's the time that I can't remember anything. I can't, I think it's, like when I, when I, I come, when I went beforehand, a couple of months ago, before I was, when I went down to [place] and when I got back out of the rehab. I can't remember anything. Literally, it's all gone.
Had 3 weeks of radiotherapy after chemotherapy as a precautionary measure. Found it more 'dull'...
Had 3 weeks of radiotherapy after chemotherapy as a precautionary measure. Found it more 'dull'...
It was in the, in the neck area on one side, on my right hand side. So that was where it had mostly been but obviously spreading down to areas of the chest as well. So these sort of new CT and PET scans had showed that, you know, all the chest area certainly had been cleared up and there were only sort of limited levels left on the neck and they were just sort of what everybody has basically but he, just to be sure we kind of had three, three weeks of Hodgk-, three weeks of radiotherapy just as a kind of, final say on the matter and hopefully blast it all out. Obviously, you know, radiotherapy goes with chemotherapy so you have to have the full experience I suppose [laughs]. So yeah, after that I was, I was, [sighs] I could see his reasons for doing that and I was quite thankful for that, that, you know, I wanted to be sure that it was all gone and that I was, you know, after this I could just approach life again without a worry that, you know, oh if we'd have only done that, I wouldn't be, you know, six months down the line. I mean I was still going to be worried that it might come back perhaps, my feelings were still going to be like that when I got to that area but it wouldn't be through my own fault by saying, you know, 'Oh I should have had radiotherapy.' I wasn't going to kick up a fuss saying, you know, basically saying 'Don't do it ' 'cos I, 'cos you know after going through six months of chemotherapy you think, oh three weeks, easy [laughs].
As soon as the kind of lead blocks that are put above you to, again, combat the rays, you can't really feel anything from the, the actual ray itself. You're kind of aware of it happening but only because you're forewarned saying, 'Ok, it's about to come on.' And you kind of hear this buzzing and that's about, that's about all it is really. It, it, it wasn't anywhere near as frightening as you perhaps think it's going to be from the name of it. And perhaps the thought of, you kind of get this science fiction view of perhaps big, bright red rays coming down on you it, it, it's nothing like that in reality unfortunately [laughs]. Be quite exciting if it was but [laughs] unfortunately it's just rather dull. But yeah so, it's, it, literally the only problem with radio is just the mundaneness of getting there every day and waiting your turn and kind of seeing all, all the other kind of people queuing up before you and that, that, you know, it's obviously no real concern in the, in the larger state of things.
Radiotherapy is also sometimes given if another first line treatment (surgery or chemotherapy) does not control the cancer.
Stephen had radiotherapy for secondary cancer after surgery and although he had 30 sessions he had very few side effects.
Stephen had radiotherapy for secondary cancer after surgery and although he had 30 sessions he had very few side effects.
I then underwent surgery to remove the lump in December 2011 and then radiotherapy in February or March 2012.
but for this one they said it was, they thought that they could easily get this tumour remove it with surgery, and then give it quite a lot of radiotherapy so I went in December two thousand and eleven, for an operation to remove a tumour from the back of my knee, the surgeon thought he’d got it all and then in February 2012 I started 30 sessions of radiotherapy, obviously could, it’s on a kind of isolated limb, the doses of radiotherapy they can give are quite big compared to what they could give for example if it was next to a main organ. So they gave it a good zap of 30 sessions of radiotherapy I had which involved going to the hospital each day, an hour there, having the radiotherapy. It took about half an hour if they were on time, and then an hour back so we did that Monday to Friday every day for six weeks.
I did that, the symptoms of that were just my left leg started to get really stiff,
These are your side effects of the radiotherapy?
Yes it’s the side effects of the radiotherapy, my left leg started to get really stiff, ‘cos there were tumours in the back of my knee so it was obviously, that’s where your leg bends and as well the skin started to get quite sore around the area and as well I lost all the hair, so I had just a bald patch on my leg. It looked a bit weird.
Received six weeks of radiotherapy after her chemotherapy failed to control her cancer.
Received six weeks of radiotherapy after her chemotherapy failed to control her cancer.
Can you explain in more detail what he did, how many sessions of radiotherapy?
Well the tumour was still quite large. So I had six weeks of radiotherapy. You have it five days a week, so that's like thirty radiotherapies, and first of all, when you go in for your radiotherapy, you go into like a, a simulator, where they simulate. And they put little drawings all over you, where they're going to zap you. And they give you a little tattoo, just a little ink and a pinprick, and it shows where they're going to direct it, but it's just like an x-ray really. You just lie on the bed, and it's all nice and'
Had three weeks radiotherapy towards the end of his chemotherapy because the cancer had spread to his spinal fluid.
Had three weeks radiotherapy towards the end of his chemotherapy because the cancer had spread to his spinal fluid.
And you had radiotherapy also?
Yeah.
At what stage did you have it?
That was, that was my final stage because the, the -
The maintenance?
Hmm, no maybe the fifth stage, my fifth that the radiotherapy that was because the, the, the cancer metastasised into, into my spinal fluid the, and I had to receive the lumbar punctures and also the radiotherapy for, for that which was a three week course of radiotherapy I believe. That was pretty much every day I had to go down and have radiotherapy.
But I kind of, that radiotherapy was, it was really surreal but I kind of enjoyed the radiotherapy in comparison to chemotherapy, the radiotherapy was lovely. I really, I enjoyed it because I mean all you don't have to do anything, you sit in a, you sit in a wheelchair, they give you a little guide around the hospital which was lovely. And it, it, whisked your trolley down to this radiography room and then you'd have to lie down for a bit and then zap you a bit and, and then, and then you know take you all the way home. It was quite a nice little journey, I mean it didn't hurt, you didn't feel anything.
Occasionally a young person with a brain tumour being treated with radiotherapy had to stay in hospital. But most of those we interviewed lived at home and attended an out-patients clinic for the daily radiotherapy treatment. This could of course be really disruptive since many patients having this treatment had to go to hospital for radiotherapy every day, Monday to Friday, for up to six weeks. One young man said he felt a bit guilty that his parents had had to spend so much time driving him to his daily appointments. It is, in some cases, possible to have your radiotherapy at a hospital that is more local to your home, in order to save travelling time.
Recalls being taken for numerous radiotherapy sessions while he was in intensive care, and...
Recalls being taken for numerous radiotherapy sessions while he was in intensive care, and...
But initially I was too ill to have a radiotherapy mask made so this meant that they had lots of video cameras installed to watch me when I had the radiotherapy and I basically had, had radiotherapy through my brain and spine but I had my head sort of bandaged to the table basically and they just did the radiotherapy like that. So I'm very luck that I'm not sort of more intellectually damaged or in a worse, a worse sort of state than I'm actually in now. Because I had 57 in the end or thereabouts.
57?
57 doses of radiotherapy.
For some time. And then I finished that and the, I had, my appointment was, when did I finish that, just, I think it was, I must have, that was March 1997. That I finished and I had an MRI obviously to look at what had happened and, and the tumour had been shrunk.
Okay.
That, that was good. I was saying before about the many sessions of radiotherapy I had and someone that I came into contact and became a friend, he calls me Heinz now because of the number of radiotherapy, 57 varieties and all that kind of stuff. Yeah ha, ha, ha and I don't pay out for hair cuts now either.
But then I went, I returned home and obviously you know radiotherapy does actually leave you pretty flat, just very fatigued and so on and so forth. So I recovered gradually.
Gives tips to other young people starting radiotherapy.
Gives tips to other young people starting radiotherapy.
Right. Relax while you're having radiotherapy, just watch telly, chill out and sleep as much as you want. Just enjoy it.
Instead of using your normal shampoo on your head when you're having radiotherapy use baby shampoo like Johnson's Baby because its gentle and delicate for your thing, it doesn't infect it or.
Ask for anti-sickness tablets off the radiotherapy staff because you feel sick during it and if you take them you won't.
I don't want to read that one.
Drink ginger beer if you feel sick. Someone said it helps.
Cut, cut your hair short to Grade 1 so people don't notice its fallen out so you, it just looks the same just shorter.
If you, there's a funny smell if you've got a brain tumour when the rays are going in so take something like Olbas Oil on a tissue and put it underneath your mask so you can sniff it and it makes the smell go away, but you can still smell it.
Get plenty of rest and sleep.
Talk things over with your family and friends so they know what's going on and don't feel left out.
Carry on as normal as well. Don't do anything like you wouldn't do or stop doing things.
Have a drink before treatment and have a drink after treatment because, because you get dehydrated.
Once all the initial preparations have been made the actual daily sessions may be quite quick - 10 or 20 minutes - although the whole visit can take considerably longer if the clinic is crowded. This can have the advantage of being able to chat to other patients who you might see every day for several weeks!
Radiotherapy doesn’t have to take over your whole life, and some of those who received radiotherapy as out-patients continued with their normal routines including attending school and seeing friends.
Continued to go to school during her 5 weeks of daily radiotherapy.
Continued to go to school during her 5 weeks of daily radiotherapy.
You stayed in hospital for five days or?
No, I commuted and most days I went back to school for not the whole day. I kind of went back for a couple of hours and my dad would pick me up. But I, you know, I kind of wanted to stay at school. I didn't want to miss out. It was first year of GCSEs and I, I thought it was very important I be there and see my friends and stuff. So I'd go in the morning with my Dad. I'd have radiotherapy on two different machines, one which did the neck and then one that kind of was right behind my ear, just kind of looked a bit like a cup actually [laughs], and they did that on my ear. And then my Dad and I used to go and have a fry-up afterwards as a treat. So every morning I'd have a big fry-up and go back to school, which was fun, I liked that.
It made me very, very sleepy. I've always been a particularly sleepy person but I was quite quiet and slept a lot if I came home from school I'd, I'd sleep on the sofa for the afternoon. But I was fine apart from that, I wasn't sick, I wasn't ill particularly, I didn't you know, because it was on my neck obviously I didn't lose any hair I wasn't. So I had quite a positive experience of that.
Side effects of radiotherapy
Tiredness can be an annoying and common side effect and may last for quite a period of time. Other side effects may depend on which part of the body is being treated. Radiotherapy to the head often does cause hair loss. Also skin can become very dry or appear severely sunburned in the place where the radiotherapy beam has been directed.
Certain areas of the brain, if treated with radiotherapy can interfere with growth especially in younger people, though this can be treated using special injections of ’growth hormone’. Other hormone problems may occur and so you will be seen by a specialist doctor called an endocrinologist. He/she will make sure that you are given the hormone substitutes that you need. Those people who had both chemotherapy and radiotherapy sometimes said that radiotherapy was easy - even pleasant - compared with chemo but it did appear that people treated with both did tend to sometimes have additional long term side effects.
Describes how her skin peeled off under her arms when she was receiving extensive radiotherapy on...
Describes how her skin peeled off under her arms when she was receiving extensive radiotherapy on...
Radiotherapy?
Yeah, sorry did I say chemotherapy? Sorry, radiotherapy and it started off fine, used to go in just literally lie on a bed, be zapped, would take about ten minutes sometimes longer because they needed to get your body in position so that they get the rays in exactly the right place every time. Towards the end sort of the last week and a half it was absolute hell. All my skin peeled off from under my arms 'cos they did, they gave me the radiotherapy from the basically from the top part of my stomach to my mouth. So I had raw armpits that were bleeding and all the skin on my neck came off as well and my mouth was really dry and I couldn't eat properly because it I could literally feel it burning in my chest. And I remember I, I still, I was still trying to go to work throughout this 'cos I thought, you know, it's going to take my mind off things if I can go into work for a few hours and I remember sitting there at work one day and literally feel the tumour shrink and it was literally it's like, I mean at the time I didn't know what it was it was like having a heart attack or something. It was like something was pressing in my chest so that was a really bad time. But I, I got through it, finished the course of radiotherapy. About a week later all my skin started to heal and about two months later I started to wear deodorant again, which is one thing I never ever thought I'd do because if you could have seen how red raw my armpits were, I couldn't have imagined anything worse than putting perfumed, you know, products on, on it. But, but it, but it did go, it did clear up. I'm still actually on tablets for indigestion because I get very bad burning when I eat, which is caused by the radiotherapy. But scans have showed since then that it's, it's ok. Again, it's still slightly out of shape but I mean this is a couple of years on now and so far so good. I'm at six monthly appointments and everything is looking good.
Had a few side effects from six weeks of radiotherapy and thinks that being very fit before he...
Had a few side effects from six weeks of radiotherapy and thinks that being very fit before he...
Okay, so you had radiotherapy first?
Yeah, six weeks radiotherapy.
To the neck?
Yeah, it was all the neck, so, so it was not too bad, but you know [laughs] you do get the side effects. But-
Ah, like what?
Well, I think they describe it as like a sunburn to the particular area. It's all very, like a specific; they are very accurate with it. But I lost my voice towards the end of it, so that was quite hard at college, and it was a bit itchy, bit sore, but nothing too major.
Did you lose your hair?
No, not from radiotherapy, I didn't. No, it was just going in every day, just losing your voice a bit, a bit red, but nothing too major, so'
Okay, so it was a rash, a skin rash?
Yeah, it was just a little bit red, a little bit peely, just like sunburn.
Did you feel tired?
Not too bad really, no. I was still training every day in the gym when I could.
Okay.
Yeah it was at my fittest point I've ever been, I think. So before it started I was in the gym everyday training for something I was doing at the time. I think that helped, just being that fit. Then you just keep it going through it, and came out the other side, just completely fine, not too bothered at all.
Okay. And you were sixteen at that point?
Yeah. I was sixteen then.
Last reviewed December 2017.
Last updated November 2014.
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