Cancer (young people)
Tests for cancer in young people
Some tests are done to diagnose cancer and some are done to assess how far cancer has spread. Doctors and nurses were usually very kind to the young people we interviewed who were having tests. When possible, young people were able to have one of their parents with them to hold their hand, to distract them with talk and games such as crossword puzzles, or to reassure them about what was happening.
Sometimes it was during the initial tests that young people became aware that there was something seriously wrong with them.
Realised that there must be something seriously wrong when the man doing the ultrasound suddenly stopped being jolly.
Realised that there must be something seriously wrong when the man doing the ultrasound suddenly stopped being jolly.
But I remember the, the, the ultrasound scan. I remember the, the guy who did, who performed the ultrasound scan was really jolly. He, he was a really nice man, he was, smiled and you know he sort of made a few jokes and I remember his face just falling and it the sort of atmosphere just became serious very quickly when he started to you know after he'd put the gel on and started to perform the ultrasound. I remember him being, becoming very, just his attitude changed and in the kind of, the way that you just feel that something's not quite right, something's worrying. I remember him, him remember him being very worried, just looking as though he was quite concerned. Just going from like a really jolly, happy you know confident and kind of, that everything would be fine to kind of very serious professional you know a professional aura I suppose you'd call it, go from a happy. I remember that and I just remember thinking to myself you know, my head was saying you know 'Everything will be fine, don't worry about it,' and my sort of heart was saying you know 'I'm quite ill, I wonder what he's thinking, you know he's not saying anything but he's, I wonder what he's thinking.'
Young people didn't always understand what the tests were for, or what would happen during them. As one girl said, "I was having all these things done to me, and I didn’t really understand what they were doing" (see interview 08). Others were frustrated when nobody told them that their test results had come back, which sometimes caused days of unnecessary worry.
Initial tests for diagnosis
Initial tests are likely to include blood tests and x-rays. If these tests suggest that something is wrong, then further tests, including scans and biopsies (when tissue samples are removed to be tested) may be needed to help the doctors to make a diagnosis. These tests are also used to clarify the position and spread of the cancer, and so to establish the 'stage’ of the cancer (see also ’Hearing your diagnosis’). Cancers occur in different parts of the body and some cancers are easier for doctors to access for testing than others.
Explains the different stages (I to IV) of Hodgkin's lymphoma and describes the tests that...
Explains the different stages (I to IV) of Hodgkin's lymphoma and describes the tests that...
So then I went back to be seen in clinic on the Tuesday and this was really the day when we had the first glimmer of hope because we were told that it was Hodgkin's. It was only stage III not IV which they thought it may have been. And my oncologist explained exactly what would happen. How long the treatment would be but he was also very, very hopeful about the outcome. And that was the day where we really thought well it's going to take a while but we'll do it and we'll get through it.
When you said, you emphasised the stage III as opposed to stage IV. Can you expand a little bit about what it means to be, to have a stage III?
Ok. Well this four stages of a disease. Stage I of Hodgkin's is where just a few lymph nodes are infected with the disease. So you might have a few swellings around your neck with little or no symptoms. Stage II would involve one or more masses above or below the diaphragm and then Stage III would involve two or more masses above and below the diaphragm. Stage IV is where it's spread to other parts of the body, for example the brain. And that was really why I had the bone marrow tests and the lumbar puncture done to show that they were both clear.
It took a few months and several tests before he was diagnosed with Burkit's lymphoma.
It took a few months and several tests before he was diagnosed with Burkit's lymphoma.
So it was a long?
It was quite a long period before we actually figured anything out. We were just stabbing in the dark because we couldn't work out what was causing me to limp quite badly.
Had a biopsy quite quickly but waited 3 months for treatment because his rare cancer was hard to...
Had a biopsy quite quickly but waited 3 months for treatment because his rare cancer was hard to...
We went in and saw the chap - he, again he probably thought it was a cyst more than anything, so again I wasn't too worried. He asked me a few questions, you know, has it changed size or anything? Is it painful? Had a look at it. And that was in the morning and he said right we'll do something about it, and in the afternoon I was in the surgery having it taken out. So, you know, he must have thought it was something. But got it done, got it out and went home that day, and then waited, for the results. So '
And how long it took for the results to come back?
It was quite a while. They weren't particularly sure what it was. I think they came back saying it was a sarcoma. Pretty quickly - it was within a month - and then they were just trying to identify which particular type. So that took a while, because it was apparently quite a rare one. It was probably about three months before they decided on a treatment for it.
Different tests are used to diagnose different cancers. For example, surgical biopsies are used to obtain small amounts of material from lumps in the body that are suspected to be tumours. These biopsies are then examined under a microscope.
A diagnosis of leukaemia involves blood tests, bone marrow tests, and spinal fluid tests. Many of the teenagers we interviewed had scans (CT, PET, and bone or MRI scans) at the diagnosis stage and throughout treatment.
Talks about his blood tests and his lung test he had before radiotherapy.
Talks about his blood tests and his lung test he had before radiotherapy.
They give you a lot of blood tests. And they check your level, blood levels, like your white count, your red count, your neutrophils, stuff like that, stuff that stops you from getting any infection. And they also check your bone marrow to see what kind of leukaemia it is, and stuff like that, I'm, I'm not sure how it all works, but that, that's when they found out I had the Philadelphia chromosome.
They also did, when they find out you need radiotherapy they do a test where they kind of measure your lungs to know like how to, so, because you obviously don't want it hitting your lungs and stuff, so how to avoid that and I remember having that one done. They put all these stickers on, around you, like around your lung and draw around you and everything like this, so yeah I remember that one being done.
Describes her biopsy, which was done after a CT scan showed a 'big lump'.
Describes her biopsy, which was done after a CT scan showed a 'big lump'.
So I went in for the biopsy, and a biopsy is where they put a needle into, and take a core, a very, very small core, out of the area where they think the tumour is, and then they can do tests on that core of material, and test what it is. And you can't then move for a little while after you've had the biopsy, because they're, they're worried about bleeding and that kind of thing, so I was lying in the hospital bed, and they eventually let me go at about 12 at night, and they, they told my Mum that I'm not allowed to go out, I'm not allowed to do anything, so that at that first time, I just went back into school the next day, and I was a little bit sore, but I was okay and just got on with everything. And I wasn't, I didn't tell anyone I'd had that done, because I knew that there was something definitely wrong now [laughs].
Explains what happened when he went for a 'bone marrow' biopsy.
Explains what happened when he went for a 'bone marrow' biopsy.
How long does the procedure last?
Oh God.
Do you remember?
It seems to last for hours [slight laugh].
You just want to forget about it?
Traumatised [smiling].
Going for diagnostic tests takes up a lot of time, especially for those who have to travel to another city for specialist tests and scans. Many of those interviewed were still going to school every day and kept busy with school work and revising for their GCSEs or A level exams at the same time as their diagnostic testing. Some were worried but found it difficult to ask questions at this stage. Few thought that it could be cancer.
Tests and procedures before and during treatment
Before any course of chemotherapy, a blood test is done to show that there are adequate white blood cells (especially neutrophils, which act to fight infection), enough platelets (needed for blood clotting), and a normal haemoglobin level (enough red blood cells). Other tests include heart and lung tests, kidney tests, and hearing tests to check that the young person is well enough to have treatment.
Chemotherapy is not given without a blood test confirming that the bone marrow has recovered from any previous course of chemotherapy. During treatment, tests such as lumbar punctures (LPs) and scans are important to show whether the cancer is responding.
Describes his first CT scan and how the strange warm feeling (from the injection of the dye in...
Describes his first CT scan and how the strange warm feeling (from the injection of the dye in...
Yeah sure, I think I had the CT scan first and that basically involved going to the hospital and you had to, you basically have to get, I remember not having, not being able to eat for kind of 24 hours before and basically turning up and it was a pretty horrific experience at first really. You kind of get used to them over time but they're still, you know, they're still not [laughing] my ideal way of spending a day you kind of have to drink this fluid drink which they tell you tastes like orange squash but it doesn't [laughs]. And you have to get through kind of four cups in like over two hours and it's, it's like a big litre and you're just kind of forcing it down and it, it doesn't taste particularly nice. It's not the worst experience you'll ever have in life but it's not the greatest drink you'll ever have either. So I remember kind of forcing that down and then they basically put an injection into you and they inject this kind of, it may, iodine I think it is and that kind of all shows up the areas of cells which are affected by the Hodgkin's, by the disease when, when you get passed through this kind of, it's like a big kind of round doughnut basically I suppose. You kind of come through, you just lie down on this kind of bench and it just passes you through slowly and you kind of breathe through. And the worst, the worst part of the whole thing basically is when they put this injection into you, it kind of feels like you've wet yourself in a funny kind of way, you get this kind of funny warm feeling down by your groin and it, it, it's quite, 'cos you're not really sure if you have or you haven't it's kind of, the embarrassment factor of it is quite bizarre. And each time you kind of, you know you haven't but you [laughs] still question it because of the feeling it's like it's so strange so it's more of an embarrassment feature than any kind of physical pain. It's just, you, you don't really expect it and you kind of think, oh have I or haven't I? You kind of see the nurses approach you and you think, oh my God don't check [laughter] so it's, it's kind of bizarre, bizarre kind of feeling when this injection goes into you. But other than that it's, it's pretty harmless really, and that's the CT scan and that, that gives you a kind of rough feeling of where, where the illness lies sort of on your chest and on your pelvis and you know, it basically runs through the whole body.
Describes what it is like having a PET scan.
Describes what it is like having a PET scan.
Right ok. Well PET scan, first of all it stands for Positron Emission Tomography so it was something that at the time was in clinical trials in, so it. My consultant wasn't sure if it was going to be conclusive. But what it involves is first of all taking a small dose of Valium to relax all your muscles and then an injection of a glucose which, which after an hour you then go through the scanner. It looks exactly the same as a CT scanner although it does take a bit longer. Whereas you can have a CT scan in about twenty-five minutes I was in the scanner two hours but the advantage is that you don't have to hold your breath or anything silly like that. You would just lie there and go to sleep if you want to and it's totally painless. And it doesn't make any noises or anything. And what it looks at is how cells are respiring and if some cells are respiring quicker than others suggests that they may be cancerous. So yeah but there's not many, not many places that have PET scanners in Britain are there, great shortage.
So how long ago did you have the PET scan?
I had my PET scan two months after I finished treatment so it was the Christmas of 2001. Yeah so that was five years ago really, four years ago.
An ophthalmologist (eye doctor) recommended an MRI scan after doing various visual tests.
An ophthalmologist (eye doctor) recommended an MRI scan after doing various visual tests.
I had the, the ophthalmologist, the specialist eye doctor, he looked at my eyes and did various tests including something called visual fields which looked at how I saw the world as it were in different parts of my vision to see really what, what I could see when I was looking straight forward. And you do this in a simple test, its just you sit there with your face in front of a, a machine and it flicks little lights on and off around your, your periphery vision, your, your main sight and so on and from that you get a picture of what vision you do actually have. And this showed that my vision was quite impaired. And he also noticed that I had quite pale discs at the back of my eyes and this is used by specialists who understand and to see how, how healthy the eyes are. And he saw that they, they weren't as they should be and recommended that I have an MRI which consequently I did.
Tests looking for the cause of infections or to locate infections are common for all cancer patients. Chest x-rays are sometimes used to look for chest infections and ultrasound scans of the abdomen are sometimes used to look for fungal infections.
A Lumbar puncture (LP or 'spinal tap'), where a needle is inserted into the back between the vertebrae into the fluid surrounding the spinal cord, are sometimes used throughout treatment to find out if cancer cells are present in the spinal fluid. LPs are also done to give regular injections of chemotherapy into the spine to treat cancer cells and prevent the spread of the cancer to the brain and spinal cord.
Lumbar punctures are done under local or general anaesthetic and some people we talked with were given gas and air (or what is sometimes called 'happy gas’). There were different opinions about which was better (some people get nauseous after a general anaesthetic while others much prefer to be 'knocked out’). After a lumbar puncture it is necessary to lie still for a few hours, which some young people said they found very difficult to do.
Felt nauseous after a general anaesthetic so had his next lumbar puncture under local anaesthetic.
Felt nauseous after a general anaesthetic so had his next lumbar puncture under local anaesthetic.
At first I had generals, I had mostly generals but a couple of times I did have, have them locally because I found that I didn't, I really didn't like the anaesthetic it used to make feel quite nauseous when I came round. So someone suggested that, that I ought to try having it done with a local anaesthetic. Because this, I was talking to another girl on the ward and she was saying that she couldn't have anaesthetics so she had hers locally.
With local. They take you in to the, well first you're sat waiting for what seems like ages, although it seems longer when you've got it with a general anesthetic because they won't let you eat anything. And you sort of, you go in to the room and there's the trolley laid out with a sheet on it and they ask you to lie down and sort of, sort of curl up with your, sort of with your knees up lying on this bed. And then sort of your mum will sit facing you so that you can talk to her, and there's, there's lots of people around, but they're all behind you, so you can't see them.
So there was just mum and this other nurse there and then you sort of feel a sharp pain in your lower back when they put the needle in and that would, then they put the local anaesthetic in that. But I never quite saw the point of that because they've already just done the most painful bit of putting the needle in. And then you, then you just sort of feel them poking around as they're attaching the syringes and stuff, then they pull it out and it's all done.
Had his lumbar punctures and intrathecal operations under sedation.
Had his lumbar punctures and intrathecal operations under sedation.
Oh yeah, yeah I had lumbar punctures and I also had intrathecal chemotherapies in the spine.
How many of those?
I think I had two of those. Yeah they weren't under full general anaesthetic, they were happy gas, nitrous oxide I think [chuckles].
Can you explain, explain to us what happens during the lumbar puncture or intra-thecal operations?
Oh yeah the happy gas operations were, they were actually quite fun [laughs]. Because no I it's a, its quite weird because it makes you feel really sort of, it makes you say the silliest things and you don't really feel as if you're there but no you know I can't remember a great deal about the lumbar punctures but I don't remember sort of feeling any pain afterwards or anything. Except sometimes I got headaches after, a couple of days after them because it drains spinal fluid obviously so it affects you know how you feel in general and it gave me you know quite nasty headaches but that was all I got from those, really.
Some forms of cancer need to be treated by having a 'bone marrow transplant'. This treatment is done in cases when treatment with chemotherapy and/or radiotherapy may need to be so intensive that the treatment destroys the bone marrow and stops blood cell production (bone marrow produces blood cells). Before starting intensive treatment, some healthy bone marrow cells are extracted via a needle for later use in treatment. The healthy cells are taken either from the person being treated or from a matched donor's bone marrow (a matched donor may be a relative or a donor from the general public). After chemotherapy and/or radiotherapy treatment when the unhealthy (cancerous) bone marrow is damaged and is no longer able to produce healthy blood cells, healthy (stored or donor-given) bone marrow cells are given to continue with treatment.
Describes having a bone marrow transplant and being in strict isolation afterwards.
Describes having a bone marrow transplant and being in strict isolation afterwards.
How long in to the treatment were you given the bone marrow transplant?
It was, it was probably about maybe about a year, a year in to it. Because I had [coughs] the chemotherapy for a bit and then they found out that I had the, the Philadelphia chromosome so they carried on giving me the, the , they gave me a different course of chemotherapy and which was getting my body ready for the transplant. But then towards the end of about eight, nine months I was ready to have the transplant, and then you get put in isolation and stuff for like a month, and then you have the transplant so for about a year before, I was having the transplant.
I [coughs], I was lucky to be quite a common blood type, I was, so they found someone, they had someone else, they had like quite a few people who matched my bone marrow.
So they, they used someone different. And its a, it's a bit of an anticlimax really because you expect it to be this huge operation and, and it turns up, the bone marrow turns up in a bag, like a blood transfusion and it's up for twenty five minutes, if that, just as an infusion, and then you just wait and see really. They, they kind of, they try and bring you to your lowest point. They, they give you radiotherapy, knock all your blood cells out, so your body's not making any blood cells and your immune system is nothing, you have to be in like a transplant room where you can't have anyone coming in and out all the time, you have one person with you. All your food has to be like specially made and, [coughs] sorry and cleaned and stuff. And yeah they kind of knock you out completely and you have the transfusion and you just wait and then your body starts making cells with the new bone marrow and it kills off whatever cells that are left and you're just waiting from them onwards.
So you were in isolation?
Yeah, in isolation, like living in a bubble kind of thing, you have to stay in a room, you weren't really allowed to walk around outside, whoever was sitting, if your parents were in the room with you, you weren't allowed visitors, whoever was in the room with you had to wash their hands like if they were going to give you anything or stuff like that, so like yeah it was really kind of weird that time.
Do you remember what you thoughts were, around that time? How you felt?
I, I don't remember like the feelings and stuff I had, I remember just, just thinking that like everyone knew what they were doing, so I was just going to say, "right do what you have to do", I'm going to have to just put up with it and if they said I have to do this, saying I'd have to do that, I was like, because I didn't know what was going on, I didn't understand, I'm not a doctor obviously, so they know best, that's all I could think like.
Copyright © 2024 University of Oxford. All rights reserved.