Cancer (young people)
Signs and symptoms of cancer in young people
Different cancers have different signs and symptoms. In this section, young people talk about how they experienced cancer symptoms for specific cancers, including for the following types:
- Brain tumours (astrocytomas (glioma)
- Ependymomas and medulloblastoma)
- Lymphoma (Non-Hodgkin and Hodgkin's disease)
- Leukaemia (Acute lymphoblastic and Acute myeloid)
- Cancer of the bone (osteosarcoma and Ewing's sarcoma)
- Soft tissue sarcoma
- Testicular cancer (teratomas)
- Nerve cancer (ganglioneuroblatoma)
- Ovarian cancer
- Skin cancer (malignant melanoma)
More information about the main cancer groups that affect young people is available on the Cancer Research UK website (see Cancer Research UK's section on ‘Teenage and young adult (TYA) cancers’).
Brain Tumours
There are over 100 different types of brain tumour that can develop in the brain (Cancer Research UK, January 2023).The ones that are more common in young people are astrocytomas (glioma), ependymomas, and medulloblastoma.. The most common symptoms are headaches, feeling sick, drowsiness and fits. The symptoms experienced depend on where the tumour is in the brain. The cause isn't known.
Several of the young people we spoke to said they were diagnosed with brain tumours. They talked about the signs and symptoms that prompted them and their families to seek medical attention.
Reported visual problems and was obviously unwell.
Reported visual problems and was obviously unwell.
And then more scarily than that I started to see, when I looked at people's faces I would only see half the face and the other bit would be just a blurred blank really. It was very frightening. I gradually got worse.
I actually went to see my local GP and he said it was growing pains and sent me away on my bicycle home, meanwhile I got worse and because of the visual problems that I was encountering I went to see a specialist eye person and they looked at my eyes and did various tests and saw that the discs as they're called at the back of my eyes were somewhat lighter than they ought to be.
And then they referred me on to a hospital in London where I had a, an MRI scan and that confirmed the presence of a brain tumour. I was really unwell I, I'd gone from healthy to, to this state of ill health in a very rapid way. I'd been quite happy at school, I'd been successful at school both in terms of doing work well and passing my GCSEs and, and also you know I, I enjoyed it and went to the gym and led a healthy normal life.
Just a few days before collapsing he experienced balance problems, said that the sensation was...
Just a few days before collapsing he experienced balance problems, said that the sensation was...
Well I had an emergency drain put in to drain the fluid off my brain so. And then I was, it's written down. I've gone blank. I was gradually turned off the life support.
Did you notice anything before collapsing?
No. I didn't.
Did you feel ill in any, in any way?
No, the only, looking back on it I have only the symptom, I was walking to school and I was like drunk, I was like going all over the place, falling off the curb. It was just like acting a bit.
How long before?
It was the day before, two days.
Okay so it was very sudden?
Sudden yeah.
Experienced a sudden deterioration of his health and became unconscious.
Experienced a sudden deterioration of his health and became unconscious.
Mother' You had about a fortnight and you were getting worse and worse. Headaches started, sick a lot and he was complaining of a, a rushing sound in his head.
Son' My ears.
Mother' In, in his ears.
Looking back at pictures of himself before he was diagnosed he realises that he was holding his...
Looking back at pictures of himself before he was diagnosed he realises that he was holding his...
Did you have any other symptoms that you could recall?
Not, not that I, not that we knew of at the time because it kind of was a gradual thing but when we look back through pictures from about two years ago then as the pictures get further on closer to actually finding out my head slightly like tilts to the right and you know it's where the pressure was building up. My body obviously just naturally trying to relieve pressure and like a week before the Sunday where I was throwing up I had my Gran's seventieth birthday party and there's pictures on that where now you can see my head is like this but in the pictures my head is right down like that, it's quite plain [laughs] to sort of see but obviously at the time not knowing it was just like that.
No pain?
No, no, no pain just like I said just the head like that.
One of the young people who was later diagnosed with an ependynoma had severe back pain. The tumours were found in the spinal cord.
He had severe pain in the base of his spine and a biopsy revealed that he had two small...
He had severe pain in the base of his spine and a biopsy revealed that he had two small...
Within days of me, I think it was late January 1994 and within days of that I had gone into hospital. And they again they didn't know what it was so I was actually put on traction for about a week maybe more. And that was just to see what would happen. Nothing happened obviously. And then the decision was made to have a biopsy. So I think that happened probably February some time, mid February I had a biopsy to find out what was going on.
It turned out that I had a tumour. I had two small tumours at the base of my spine just slightly to the left right at the base of my spine. At that time I mean I was so young it, I wasn't really given the whole picture in terms of the details of what exactly what it was. I didn't learn that it was an Ependynoma until a long time, well until recently, the last couple of years really.
Hodgkin's disease (lymphoma)
Hodgkin's disease is a cancer of the lymphatic system that affects white blood cells. The lymphatic system is part of the immune system and is made up of a network of lymph vessels and glands as well as a number of organs. The most common symptoms are painless, swollen glands. The glands most likely to be affected are those in the neck, armpit, groin and chest. The cause is unknown. We interviewed a 14-year-old boy who was diagnosed with Hodgkin's lymphoma.
He had a lump on his neck but his other symptoms could have been caused by TB or asthma.
He had a lump on his neck but his other symptoms could have been caused by TB or asthma.
Non-Hodgkin lymphoma
Non-Hodgkin lymphoma (NHL) is a cancer of the lymphatic system. The lymphatic system is part of the immune system (the system that fights off illness) and is made up of a network of lymph vessels and glands as well as a number of organs. The most common symptoms are painless, swollen lymph glands. The glands that are most likely to be affected are those in the neck, throat, chest and abdomen (belly). The cause isn't known.
The first symptom he had felt like 'I'd pulled my back'.
The first symptom he had felt like 'I'd pulled my back'.
Well, I was just at work and basically I felt like I'd pulled my back and [sighs] next day or two it was just getting worse and I just thought nothing of it so I went to the doctors just asked for some more powerful painkillers because it was, the normal paracetamol wasn't working, and what it was, was, I took the painkillers and they were just doing no good. I thought, well, I've really damaged my back this time, I'm just going to have to take it easy at work.
So I took it easy and went to my doctor's again and he put me on different types of painkillers till we found something which actually worked. Then I decided to actually change jobs for a much easier and lighter job and when I got what, when I, when I got home from one of the jobs, my back completely went and I thought well, I tried chiropractors and they, they were sorting out my back and after that my back went again.
So went to the doctor's and just said, 'Look, it's, it's just not sort of getting me, back's completely going.' We, we tried more painkillers 'cos we, we'd had x-rays and it showed nothing up at the time, and I'd say about four months afterwards I got severe stomach cramps just after a night shift. And it was quite an intense pain so I, I wasn't, drink, when I tried drinking water it was coming back up and what have you so when I went to doctors, he rushed me straight to hospital, and stayed in there overnight, and then went for like a I think it's and IV x-ray when they inject dye into your blood and it just showed up like a, a little, hotspot, and a few weeks later I got a appointment for like a for an MRI scan at [place] and it showed a few more hotspots so we found out by going to another hospital to get a biopsy on my back and when I was going for that it's very easy, you know, easy to come to terms if you think well, must be something serious at that point if it's a hot spot, what can it be? And what if it's so, so things flash through your mind. That test proved inconclusive and they wanted another bone scan so I went into the another hospital to have one done on my hip. And that proved that I had Burkitt's like lymphoma.
One young man had a lot of back pain and was later diagnosed with Burkitt-like lymphoma, a rare type of non-Hodgkin lymphoma.
Acute lymphoblastic leukaemia (ALL)
There are a few different types of white blood cells which help fight infection and disease. ALL is a cancer of one of these white blood cells, the lymphoid cells. The most common symptoms are feeling tired, bruising and being prone to infection. Some people may also experience pain in their bones. The cause isn't known.
We talked to several young people who had or are having treatment for ALL. Here they talked about the symptoms they had.
One young man who trained at a gym everyday got worried that his cough was not getting better and...
One young man who trained at a gym everyday got worried that his cough was not getting better and...
When I was as I used to go to the gym quite a lot up at Healthland based in [town] city centre. I used to do a lot of training there. And then out the blue I got a cough and it was a really bad cough. It wouldn't go away. Whenever I used to get a cough and I used to go to the doctors I just used to train and try to get out of it that way. But then I felt something was wrong with me so I went to the doctors and asked them for medicine. And they gave me some you know, some medicine for the cough and that but that didn't work, it didn't work so I went back to them and I said, 'I've never had a check-up in my life either so I'd like a check-up as well'.
So they took my blood and they sent it off to the hospital and then they called me back. They go, 'You need to go to the hospital. You need they, they want you to come in so they can do a bone marrow test on you because you've got too many white cells in your system and they're immature. There's a lot of reasons that it could, you know, could be behind that but they want to, you know check you out.' So I said, 'Ok I'll go'.
Says that he never felt unwell with the leukaemia symptoms but felt out of breath and was a bit...
Says that he never felt unwell with the leukaemia symptoms but felt out of breath and was a bit...
Well I was diagnosed when I was just about 15 and a half with ALL leukaemia which we later found out I had the Philadelphia chromosome as well which can't be treated just by radiotherapy it has to, you have to have a bone marrow transplant basically.
And, but when I, when I was first diagnosed it was kind of, it was kind of weird because my parents were away for a little while and I was staying with a friend and I was just getting headaches and I had like an ear ache, I thought I had a cold but I was getting out of breath really, really quickly and at first I thought it was just because I was unfit, like I wasn't doing much exercise and stuff.
And my parents came back from holiday and I was really pale. I went down to the doctors and he gave me a blood test and didn't think anything of it. First, first of all we went and had my eyes examined because I was getting headaches and the person who did my eye test said that I looked like I had jaundice, I was really pale and it, a bit yellow.
Had a bad cough and pains in his legs so became worried and asked his mother to take him to the GP.
Had a bad cough and pains in his legs so became worried and asked his mother to take him to the GP.
How old were you?
I was thirteen or I remember. And then it started to get a bit worse and I was getting really worried so I said to my Mum, 'Look can we go to the doctors to get it checked out?' So she said, 'Ok'. So I was taken to my local GP and he examined it and thought it was some sort of hip displaysia and that it was referred pain so instead of feeling it there it was in my thigh. So he said well if it is this we need you to go to hospital. So I went to hospital and they did some X-rays and routine blood tests. And they said, 'Well these are all fine but there is obviously something wrong so we want you to stay in for overnight observations and stuff' which upset me a lot because it was the first time I'd actually been in hospital on my own because my Mum had to, couldn't stay. So she had to go home. So I was very upset and emotional and I was put on to the Children's Ward. And basically a nurse just kept, kept coming in and checking on me. And they did several tests and stuff. And then the next morning the consultant came in and said, 'We're sorry we've, we know that your white count's elevated but we don't actually know what's wrong. So come back in ten days if it hasn't got any better and we'll see how it goes from there.'
So over the next ten days my leg got much worse and I started to feel really tired and coldy and it was terrible. And I got like a pinprick dot, a red dot, rash on the bottom of my left leg. And I noticed it in the bath and I was like, 'Oh my God'. So I got out of the bath rushed to my Mum and was like 'Mum look at this what, what is this?' And like because I thought it was meningitis so I was really scared. And my Mum was like 'Oh it's probably just a heat rash'. So that was ok. But of course I was a bit like oh I don't know.
So we went back to the consultant's clinic and he was, he looked at it and was like 'What's, what's this? Where's this come from?' And we were, we don't know. It just appeared. And he was like ok we have to do some serious blood tests.
Acute myeloid leukaemia (AML)
White blood cells help us fight infection and disease. AML is a cancer of one of these white blood cells, the myeloid cells. The most common symptoms are feeling tired, bruising, being prone to infection and for some pain in their bones. The cause is not known.
Cancer of the bone
There a number of different types of bone cancer, but the ones that young people are most likely to develop are osteosarcoma and Ewing's sarcoma. We don't know what causes them but do know that the bones that tend to be affected are the leg and arm bones and the pelvis. The most common symptoms are pain and/or swelling around the bone.
Two young people who were later diagnosed with osteosarcoma and Ewing's sarcoma talked about what symptoms prompted them to go to their doctor.
The first symptoms he remembers are a massive cramp on his leg following by walking difficulties.
The first symptoms he remembers are a massive cramp on his leg following by walking difficulties.
Over the next few months I, I experienced some pain in it but I still continued walking four miles to and back from school a day so it couldn't have been that bad, just the fact that I thought it was a torn muscle just made me, made me carry on even though it was painful. But then gradually, sort, this began in October and by the spring it was getting worse even though I would have denied that at the time. And, and, and even to sit down for long periods of time left the leg feeling, feeling very, very sore. The whole area along the bottom of the leg was numb. Along the top of the leg was numb and I was just getting pains all up and down it from my awkward posture that I'd adopted to compensate for it. And people would comment that I was walking in an extremely awkward, awkward manner although not as many people as you would have expected which is all, which is typical. Then, then around April and May it was really, I was really beginning to get very, very tired and, it was, I'd, I tried not to let it interrupt with my school work as I was doing four A' levels at the time but, but it, I couldn't, I couldn't help it and, and ultimately I had, I was going to sleep quite a lot earlier and just getting really, it was really just wearing me down.
She had a very bad pain in her shoulder.
She had a very bad pain in her shoulder.
Soft tissue sarcomas
Soft tissue sarcomas are cancers of our supportive tissue which includes muscle, cartilage, fat cells and blood vessels. The areas of the body that they usually affect are the legs and arms, the chest, pelvis and the head and neck area. There are lots of different types but the ones that most commonly affect young people are rhabdomyosarcomas, synovial sarcomas and fibrosarcomas. The first symptom is usually a painless lump or swelling. The cause is unknown.
We talked to a few young people who had been diagnosed with a soft tissue sarcoma.
The first symptom he noticed was a painless lump in his neck.
The first symptom he noticed was a painless lump in his neck.
And how was the lump? Was it of a different colour, or'?
No, it was all the same colour. It was just underneath the skin. You could kind of wobble it around. I didn't know if it was just, you know, a new muscle that had turned up or -
It was wobbly?
Yeah, a little bit. It was pretty solid, but a little bit wobbly.
It was painful when you touch it?
No, no. I could poke it around or move it or whatever. It was quite small, but no pain or anything.
So you went to the doctors?
Mm hm.
With your dad?
Yeah, I went down to my GP with my Dad and he referred us straightaway to a specialist in [place] in the hospital, so that's where we went there. He probably thought it was more of a cyst than anything, so that wasn't too worried or anything at that point.
Testicular cancer
There are two main types of testicular cancer: teratomas and seminomas. Teratomas tend to affect younger men. The symptoms include a painless lump or swelling in the testicles.
Two young men interviewed for our Testicular Cancer section talked about the signs and symptoms that prompted them to seek medical attention.
Said that he had a swollen testicle and a dull pain in the stomach area.
Said that he had a swollen testicle and a dull pain in the stomach area.
Said that he found a lump in his testicle but did not experience any pain or discomfort.
Said that he found a lump in his testicle but did not experience any pain or discomfort.
Was it quite easy to feel the lump?
It was yes, it was definitely obvious that it was there. It was a reasonable size, probably slightly less than a quarter of the size of the testicle at the time.
And how long had you, how long had you been aware that there was something wrong before you decided to talk to anybody?
Between 2 to 3 weeks really. That was what I was remember as the time of thinking about may be I should do something, may be I shouldn't, but I'm not too sure from before that unfortunately.
Other types of cancer
Occasionally, cancer is discovered 'by chance'. A young woman who was diagnosed with a very rare nerve tissue cancer (ganglioneuroblatoma) explained that her cancer was found when she was having the back problems she was experiencing investigated.
Had recurrent back problems after a car accident and her GP sent her for an X ray which revealed...
Had recurrent back problems after a car accident and her GP sent her for an X ray which revealed...
So I went back, this was around Christmas time, I went back after the holidays for another x-ray and they'd seen something again, they didn't think it was the x-ray machine, they thought it was something to do with my kidneys. So I went back again and I was sent for a CT scan, and the CT scan showed a large mass above my left kidney which had calcified.
So from there things happened pretty quickly, I went to see a consultant surgeon a couple of weeks after I'd been for the CT scan and he said he believed that the car accident had caused me to have a blood clot in, above my left kidney and that whatever, it needed to come out; because it was fairly large and it shouldn't be there. So from then we waited, I went through and had another test to check my adrenalin levels so I had to do a couple of twenty-four hour catecholamine tests. These showed extreme, extremely elevated levels of dopamine so I had to again repeat the, the catecholamine tests several times and the results were the same.
I went in for surgery and everything went well, I had an open adrenalectomy, where they removed my left adrenal gland. Now previously nobody had ever mentioned adrenal glands to me, I didn't even know I'd got an adrenal gland [chuckles]. So it was pretty, pretty confusing. The morning of the surgery they said you know, 'You do realise you're having your adrenal gland taken out and you might lose your spleen?' Well every, everybody was sort of very confused as to what we were, what was happening but I, I did have my adrenal gland removed, I did have a bleed on my spleen but that, that stayed intact luckily.
When I came round I'd been in theatre for quite a while, I came round and I was very poorly, I was in, the high dependency unit where they said that I'd, they'd removed a large mass from my left adrenal gland but we weren't given any other further information. I was in hospital for a further two weeks and at the end of two weeks the results came back from the pathology lab saying that I'd actually had a cancer that was, that was termed as a 'ganglioneuroblastoma' which is very rare as I'm led to believe. The surgeon actually had never seen anything quite like it before, I was quite a novelty amongst the hospital, everybody knew me and my diagnosis.
Some cancers have symptoms that are hard to detect. For example, ovarian cancer can look like a stomach problem, irritable bowel syndrome (which is also called IBS) or gallstones.
Was thought to have IBS after she was infected by a parasite in Nepal, but it turned out to be...
Was thought to have IBS after she was infected by a parasite in Nepal, but it turned out to be...
Noticing the symptoms, well I, when I was about, I was just seventeen and I went away to Nepal, and I came back with a parasite called Giardia, which sort of affected, which is a parasite which lives in the small bowel, and so after that for a long time I had Irritable Bowel Syndrome and I had, went off for a few tests, like a Colonoscopy and that sort of thing, and they, they sort of said, 'Oh obviously the Giardia's sort of made Irritable Bowel caused sort of Irritable Bowel Syndrome'. So that was sort of really, the, initial thing, within what happened and then I went to University and I started University in September of 1999 which I would have been eighteen and for my first year at University I was fine, I had a nasty, like in hindsight I had a nasty cough,
For, for the most of my first year because it's first year at University you sort of think, 'Oh I'm tired, it's Freshers Flu, it's'. You know that kind of thing, and, and I had some problems with the Irritable Bowel Syndrome but really nothing any, anything major at all, I didn't sort of take any medication for it anything like that so it, so it just, just let it all be then I came home for the summer by this time it was the summer of 2000, and I was working just part time over the summer before I went back to University, and just one night after my, it was must have been just before my nineteenth birthday I had these sort of really nasty stomach pains, it was sort of almost up under my ribs, it'd sort of feel kinda like cramps almost that would come and go every few minutes, it was just overnight really, kind of unpleasant but by the next day I was feeling fine again and just assumed it was a bug or whatever and went back to work. And then six weeks later, I had the same sort of cramping pains and but that time I was also really violently vomiting and this was during the night as well and it sort of kept going and by the morning I was sort of really exhausted and had nothing left so we called the Doctor, just thinking I must have a bug or something and so she came out to see me and sent me to the hospital for an ultrasound scan with suspected gallstones and she sort of said, 'Well I don't really think you've got gallstones but, we could we should try, try and check for everything'.
We also interviewed a young woman diagnosed with malignant melanoma (skin cancer).
Noticed the sudden appearance of a large mole behind her ear that itched and bled.
Noticed the sudden appearance of a large mole behind her ear that itched and bled.
So I went to see my GP when I got back and he had a look at it, and he was very much, 'It's fine, there's nothing wrong with it, just leave it, keep an eye on it.' But as far as he could tell there was nothing wrong with it. And then I waited a couple of months and I was, still wasn't happy, I went back to my GP who agreed to have it taken off, so I was referred to a hospital in [place] I think, where they took the mole off and just before, like a couple of weeks before my mole taken off, which was in October half-term, I remember being in school and it was itching and flaking and half of it fell off in the lesson, into my hand, and it started bleeding and I thought that this isn't really right but didn't pay much attention to it because I, I knew I was having it taken off.
Also see our sections on Ovarian, Cervical and Testicular cancer for more experiences and information.
Tips for others
- If you have any of these symptoms ask for a check up, even though the chances are against it being cancer.
- Keep a record of your symptoms (how long you have had them, how bad they are) so you can tell the doctor.
- Talk to your doctor about further investigation (e.g., blood tests or X-rays) if you are worried.
- Tell your doctor what you are worried about.
The information about symptoms has kindly been provided by Macmillan Cancer Support from their 'Teenagers and young adults affected by cancer' section.
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