Lymphoma

Radiotherapy

Radiotherapy uses high dose x-rays to destroy cancer cells. Because cancer cells are dividing quickly they are particularly susceptible to damage from radiotherapy. Early stage Hodgkin lymphoma used to be treated with radiotherapy alone but these days it more commonly follows a course of chemotherapy. Radiotherapy may also be used after chemotherapy to treat advanced Hodgkin lymphoma. Radiotherapy may be used on its own or in combination with chemotherapy to treat high grade non-Hodgkin lymphoma and some people with low grade non-Hodgkin lymphoma. It may also be used to treat relapsed disease.

Radiotherapy is targeted directly at where tumours are in the body. The area to be treated will be mapped out in advance using a machine called a simulator, often using a CT scan. Marks may be made on the skin to help line up the x-ray machine for the treatment. People we spoke to had radiotherapy to the head, neck, shoulder, chest, armpit, eye, eyelid, spine or groin. Most people had to lie flat during treatment, others said they had to lie with their arm up at an angle so the x-rays could target their armpit. One man had total body irradiation (TBI) as part of preparation for a stem cell transplant.

Found it painful having two black dots marked on her chest to line up the radiotherapy machine...

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Age at interview: 44

Sex: Female

Age at diagnosis: 36

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And I got tattoos from the radiotherapy as well, two black dots on my chest, because you have to be exactly in the right position every time you go. And I was quite shocked when the nurse did it because she said, 'Oh you're going to feel a sharp prick in your chest now' and sort of dug the thing in and out again and it was like, 'Uh' it hurt a lot. But yeah what else?

So have you still got those marks now?

Yes, yes.

Oh right.

They're there for life, my two black dots on my chest.

Very fetching.

Mm.

Does that bother you?

No not at all, not at all. I just thank my lucky stars that I came through it, you know, I didn't care about anything, it's not that I didn't care about what happened to me, I just wanted to get through it.

Enjoyed the radiographer's joke about being held in position for his whole body radiotherapy.

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Age at interview: 57

Sex: Male

Age at diagnosis: 44

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And I had I think it was about a week of whole body radiation at a nearby hospital. But this involved actually being tied up in a position, I imagined you'd be lying under a machine, you're actually against a wall and it was projected onto you. And you're turned over like a chicken so both sides were equally done.

I loved the sense of humour of everyone I met in the hospital. That's a fairly typical thing in that part of Scotland is their sort of very sharp sense of humour. And when I was being tied up and before I could object I was told it was the only place in that city you got tied up for free. But they might charge me to untie me if I didn't behave. I felt pretty woozy at this stage. You were driven backwards and forwards by a volunteer. And then you went into a period, you were on diamor-, you know, a low dosage of diamorphine, and it was a very sort of fuzzy period.

People who have radiotherapy to the head and/or neck may have a plastic mould or mask made to hold their head in position during treatment, which can be unpleasant but it does not last long. One man said the staff tried to talk to him after putting the mask in place but this was pointless as he couldn't speak through it. Lead shielding may also be placed between the patient and the x-ray machine to protect other areas of the body from the radiation.

A plastic mask was made to hold his head in position during radiotherapy and having it fixed to...

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Age at interview: 64

Sex: Male

Age at diagnosis: 62

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Another aspect of the radiotherapy was the, because I had it in the neck area, which a lot of people will have, is to keep your head still during the radiotherapy, the treatment, which only lasts seconds. They make a mould, which is part of the delay in your radiotherapy actually starting, because you've got to go in and they make a mould, and then you've got to go back and they try the mould, and then they've got to go back and readjust it, whatever. And the particular facility they have that I attended, I did say to them they should really redesign the fastening, because you're lying down and you're going to, some people will be very claustrophobic. I'm not too bad, but this mask goes over your face and then they lock it onto the table so that your head is in a particular position. And it's a little bit like the dentist's drill, you hear the drill, the drill is worse than the actual drilling, and this is perhaps because you're slightly enclosed it's, I mean it's clear perspex, you can see out OK, but it's crr, you're getting locked in a cell sort of and maybe other places will have a slightly more amenable way of locking the thing down, slightly quieter. But that was really, the radiotherapy wasn't a problem, it was OK.

Talks about his experience of radiotherapy and having masks and lead shielding made to protect...

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Talks about his experience of radiotherapy and having masks and lead shielding made to protect...

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Age at interview: 84

Sex: Male

Age at diagnosis: 70

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Tell me a bit more about your radiotherapy, what was it like having that?

The preliminaries are the thing' they made masks and things and they make lead deflectors and things to make sure that it's directional and that it doesn't spill over in the wrong places. That took quite a time actually just getting that right before we ever went down into the basement and to where all the works were. And once it started it was relatively quick, it was explained what was going to happen, the first time they did it, and the camera is brought down to the right position over you, all the staff retreat into their bunker and you're told that the thing's now starting and the red light comes on. You don't feel a thing. I was a bit concerned about the number of roentgens I was getting because I'd already been exposed in my Naval career, I'd been to megaton tests and ground bursts and things and got pretty close to it sometimes so, and incessant x-rays was all sort of building up a bit.

The treatment is given in the hospital radiotherapy department, usually as daily sessions from Monday to Friday, with a rest at the weekend. The length of treatment depends on the type and stage of the lymphoma and ranges from one day to eight weeks. Each treatment only takes a few minutes to give. One man had to make a long journey each day to spend only a short time at the hospital. Another advised people who do not like early mornings to avoid getting booked into the 9 a.m. slot, as he had, because they would have to come at the same time every day. During the short time that the radiotherapy is given the staff leave the room but they can still see you and talk with you. One woman found this 'freaky'. A man took his grandchildren into the waiting room one day to watch the red light go on and to try to imagine what was happening on the other side of the wall. One man said he enjoyed radiotherapy because he could lie around doing nothing during his treatment. Another took part in a trial comparing two different regimens of radiotherapy (see 'Treatment decisions').

Found radiotherapy not nearly as frightening as he had imagined and in fact found it rather dull;...

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Age at interview: 25

Sex: Male

Age at diagnosis: 22

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And the actual treatment itself the worst part of it was basically trying to get into the position for their rays to be exactly right on the neck. Basically it's kind of, they put you into this kind of wooden table and kind of pin your arms so that basically you can't move so that obviously the rays of the radiotherapy only hit the affected area, rather than unnecessary good tissue and blast that as well. So the most uncomfortable part is basically just getting into that kind of position with your arms kind of pinned back in this kind of weird uncomfortable position and just lying there for however long it takes is the only real uncomfortable part.

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 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 all it is really. 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's nothing like that in reality unfortunately. Be quite exciting if it was, but unfortunately it's just rather dull. But yeah so it's, literally the only problem with radio is just the mundaneness of getting there every day and waiting your turn and kind of seeing all the other kind of people queuing up before you and that, it's obviously no real concern in the larger state of things but'

You had to travel long for your treatment?

Not hugely long, I lived in at the time my hospital was in London so it must have been about kind of hour's car journey each day so, kind of there and back. But obviously most of the going back would be during sort of peak hour, rush hour traffic, so but that's kind of the abiding memory basically of radiotherapy is sitting in traffic on the way home just waiting to get there. It's not, that's probably less pleasant than the actual kind of whole process of it could ever be really. It's really not as big a worry as you kind of think it's going to be before you have it because I had this kind of cartoony fear of it I suppose.

Radiotherapy targets dividing cells, and healthy cells in the treatment field that are dividing quickly, such as the skin and lining of the mouth and gut, are also damaged. This is what causes the unwanted or side effects of treatment. A common unwanted effect of radiotherapy is tiredness but its intensity varies between different people. One person said they felt a bit tired but it was difficult to decide how much of it was due to the radiotherapy and how much to the illness itself. Another said, 'the treatment made me much more ill than the actual illness itself'; he felt weak and took three months off work. One person said the tiredness was worse towards the end of the treatment period and she needed a nap in the afternoons, another that he 'slumped on the sofa' for months afterwards. Some thought the tiredness was more do to with the daily travelling to and from hospital rather than the treatment itself.

Tried to treat her 'daily commute' to hospital for radiotherapy as part of her normal routine and...

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Age at interview: 35

Sex: Female

Age at diagnosis: 31

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So really from that point of view the radiotherapy I was very lucky with. I worked very hard not to make it tire me out. I think I had, people had talked to me about how they responded to radiotherapy before I had mine, and people had said they got very tired, but that part of the tiredness came from every day having to get to the hospital and the kind of stress of getting to the hospital and being to appointments on time and then hanging around and all the rest of it.

So I tried to treat it like a kind of daily commute, because I've always worked and I'm very used to commuting. So I tried to think of it in those terms and that actually was very successful for me. And if I had radiotherapy in the morning I would get up when my husband and daughter got up for school. I would get up too and go as though I were going to work. And if I was going in the afternoon I would get up in the morning anyway and go to the gym or, you know, just be doing something that meant I had routine in my day, and radiotherapy was just part of that. And that worked I think quite successfully for me because I didn't have the same kind of tiredness that I know a lot of people have reported from radiotherapy.

People who had radiotherapy to the neck and chest often developed a dry mouth or a painful swollen throat. Some said this made swallowing difficult for a while and they could eat only soft food. Some were given anaesthetic lozenges or mouthwash to soothe the pain. One man's voice went husky. A man who had radiotherapy to his head also developed oral thrush (a fungal infection) and damage to his senses of taste and smell. People whose treatment field included areas of their bowel often felt nausea, but vomiting was prevented by taking anti-sickness tablets.

After having radiotherapy to his head he found it difficult to talk, eat or drink; he developed...

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Age at interview: 49

Sex: Male

Age at diagnosis: 39

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But I learned the, I suppose the truth of understatement. The consultant haematologist said to me, “You may feel a little discomfort in your throat”. I think it was after about a week I couldn't talk, I couldn't drink, or I had difficulty drinking, I certainly couldn't have eaten anything, I couldn't speak, my mouth was so sore I couldn't even have a cigarette*, everything hurt. It was so, you felt great otherwise, but the pains all round here and down your throat were absolutely incredible. And to make matters worse I got a dose of thrush and it was clinging to the roof of my mouth like fur, and just trying to get one of the nurses at the place where I was getting the radium to take me seriously and have a bloody look. And they wouldn't do it, so I took a teaspoon out of the café one day, one of the little plastic teaspoons, and I went [scraped the roof of his mouth] down in front of them and they had a quick look then and gave me some stuff to sort it out.

So the radiotherapy you just had to your neck or was it your chest?

It was through about here, went through. The actual tumour was in the cavity behind my nose. It's taken away, the only real lasting effect of the tumour is it's taken away quite a bit of my sense of smell and a bit of my sense of taste. But I think the sense of taste that was probably burnt off with the radium. I mean I had a line along my tongue which looked like a suntan line. Everything at the back of it was bright red and it was just normal pink at the front. But it felt like, on your tongue it felt like somebody had pulled your tongue out and went urgh, urgh, urgh with an open razor and you had all these little nicks in it and it was just so, I threw a plate of, was it tomato soup? I think it was tomato soup I threw across the floor because it was too crunchy. And I've never found any crunchy tomato soup since, which is a shame because I'd like to try it.

* Patients having head and neck radiotherapy are usually advised not to smoke as it may increase the toxicity of the treatment.

In some people the treated areas of skin became red and sore, as in sunburn, and they were given creams or powders to moisturise and soothe it. People who had radiotherapy to parts of their head and neck lost their hair in those areas. One woman believed her hair had thinned after radiotherapy to her eye. She also had to protect her eye from sunlight afterwards, otherwise it watered a lot.

She used E45 cream for her burnt neck and could only eat mashed food because of her sore throat;...

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Age at interview: 35

Sex: Female

Age at diagnosis: 31

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And I went in every day for three weeks, every weekday for three weeks, and had radiation to, from just below my chin to sort of the middle of my chest, so taking in the whole field that, of the two sites, my neck and my chest.

And they did the, they did it from my front and then turned the machine around and did my back as well because the site is fairly central in my body front-to-back as well as side-to-side. So it's fairly central. And the radiotherapy, I actually have been fantastically lucky in terms of side effects and so on. My skin round my neck is quite sore and peeling now as though I have fairly serious sunburn or something, but other than that, and I have been absolutely lathering on the E45 cream, and the rest of my skin has been fine. I did get a very sore throat, although they protected some of my throat with lead it wasn't fully protected, and I haven't been able to eat a proper diet, everything gets mashed up into soup. Since about halfway through the radiotherapy, from about the, towards the end of the second week I stopped being able to eat very much at all.

But my throat is almost recovered now so that's kind of ten days on from radiotherapy. And my neck is, will be fine I'm sure in another couple of days.

Last reviewed February 2016.
Last updated February 2016.