A-Z

Lymphoma

Symptoms

The most common symptom of lymphoma is a painless swollen lymph node in the neck, armpit or groin. Swollen glands commonly result from infection and very few people with swollen glands are found to have cancer. For this reason GPs will usually treat people with an antibiotic or wait for a few weeks to see if the lump goes away before referring them to hospital for tests. Several people we interviewed had this experience and some young people were initially suspected of having glandular fever rather than lymphoma. One was told her symptoms were associated with her pregnancy. Some people hadn't noticed their swollen lymph glands but had them pointed out by someone else or by the GP when they presented with other symptoms. 

 

She discovered her lump and her GP asked her to return in two or three weeks if it hadn't gone away.

She discovered her lump and her GP asked her to return in two or three weeks if it hadn't gone away.

Age at interview: 67
Sex: Female
Age at diagnosis: 67
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Well May started off well, I spent three weeks, cycling holiday, came home May 20th. May 28th I was sitting reading and I couldn't get my neck comfortable, it was aching and I thought, 'Oh I'm not sitting right' and 'I'll put a cushion behind my neck'. And when you've got an ache you tend to touch the part that's aching, don't you? And so, on Saturday May 28th I found this lump. I went to NHS Direct and read that any lumps or swellings in the neck report to your doctor immediately. Of course it was a bank holiday wasn't it? So that was Saturday, I was outside the doctors' before they opened on Tuesday morning. And the doctor explained it could be what I think the proper name is a gland, lymphatic gland which had swollen up to fight off an infection that I had, and I was to go back in two or three weeks if it got larger or if it hadn't gone away. Well I like to think I don't dramatise things, I take things calmly, so I thought, 'Oh I'll give it the full three weeks and then we really know where we are'. So I left it the full three weeks, went back, the doctor immediately said, 'I think it's getting larger, I need blood tests this morning.' I thought, 'Oh gosh'.

 

Explains what prompted her to do something about a lump she'd had on her neck for years.

Explains what prompted her to do something about a lump she'd had on her neck for years.

Age at interview: 61
Sex: Female
Age at diagnosis: 60
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I'd had a lump on the side of my neck for some time, some years I would say, and I had mentioned it to the GP who'd said it was nothing to worry about. But I noticed, it was getting bigger and I was aware of the fact that other people could see it. And in the course of one week I was somewhere where I saw a poster which said, 'I had a lump on the side of my neck and it was cancer but it was treated.' And two days later I heard of somebody who had, someone I knew who'd been diagnosed with non-Hodgkin's. And I thought, 'I'd better do something about this lump'. 

So I went to another GP in the practice and realised immediately that I was in trouble. Her reaction was so marked that I think I knew right from that moment that there was something really wrong. And she arranged for me to see a haematologist within a couple of days. I had a phone call suggesting that I might go through early in the morning and he would see me before he saw his ward rounds. 

 

His lump was pointed out by a doctor he met at a social gathering.

His lump was pointed out by a doctor he met at a social gathering.

Age at interview: 53
Sex: Male
Age at diagnosis: 47
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I was at a church barbeque in September 1999 and we had some visitors to the barbeque whom I'd never met before. They'd come down to [place name] my town from [place name] Scotland for a day conference and I just happened to be talking to one of them and he said, 'I hope you don't mind me saying this but you've got a lump on your neck just here, and I'm a GP and if I were you I would go and see your own GP.' So I thought, 'Oh I wonder what that is?' And so I wasn't particularly apprehensive when I went to see my GP a few days later. Anyway she had a look at it and gave me a thorough examination. And at the end of it she said, 'All your lymph glands are swollen and I think you must have some serious disease, possibly cancer, and I would like to admit you straight away to the hospital.' 

So that was 5 o'clock on the Wednesday, at 6.30 on Wednesday I was admitted to hospital, which was amazingly fast, and in a bit of a state of shock. 

And presumably you hadn't noticed the lump on your neck, or if you had you thought nothing of it?

No I hadn't noticed the lump on my neck but I had noticed that the top of my thighs seemed to be a bit swollen and I just thought it was the muscle bulging out, and I didn't realise there were lymph glands down there so I hadn't thought anything of it.

Some people with lymphoma notice only swollen lymph nodes, others also have one or more other symptoms. The most common are night sweats, fevers, weight loss, loss of appetite, tiredness, cough, breathlessness, or a persistent generalised itch. An absence of the most common symptoms - such as night sweats - sometimes falsely reassured people that there was nothing wrong. Some people recognised only later that the symptoms of this sort that they had experienced had been connected with their lymphoma. Middle aged women tended to attribute night sweats to the menopause. Weight loss was sometimes put down to dieting or breastfeeding. One man's prolonged weight loss was attributed to his emphysema. Tiredness was often attributed to other health problems, work stress or parenting. 

 

He had fever repeatedly for exactly the same number of days with his lymph nodes swelling and...

He had fever repeatedly for exactly the same number of days with his lymph nodes swelling and...

Age at interview: 45
Sex: Male
Age at diagnosis: 45
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And I lived with these lumps in my neck for a number of weeks, and it was probably about three months later that I started getting these odd fevers. And it would start as a cold does, with a sort of slight sort of shiver, and then you'd get a proper fever and you'd be sort of literally sort of, your teeth would be chattering. And I was munching Paracetamol and Aspirin like it was going out of fashion. And these fevers used to last for about nine days, and it would always be nine days and then they'd go away and then I'd get another one, and my partner said to me, 'This isn't right, you must go and see somebody about this.' And I said 'Well what sort of test are they going to do?' And she said 'Well don't get stroppy with me love, I'm not a doctor but I really think you ought to get this sorted out.' 

Anyway by about the fourth bout of this nine day fever I was composing an email to my infectious diseases consultant to say this is clearly something infectious cos there's lumps in my neck and I keep getting these fevers, and what sort of blood tests do I need to sort out what it is? Anyway I was looking on the Internet and I was looking for relapsing and recurrent fevers and it didn't sound like anything to do with farm animals or foreign travel because I hadn't been anywhere, and then I came across this rather obscure sort of fever call Pel Ebstein Fever, which is precisely what I said' it was a clockwork fever, a timetable that starts with a nine day, or however many days, it depends on the individual, but it's always the same number of days, and it just vanishes at the end of that period to reappear usually about the same distance or a bit longer ahead, and then you get another nine day fever that would then disappear again. And if you have lumps, it said the lumps do get bigger when you've got the fever and they get smaller when you don't. And I had one of those Pauline moments, I just knew what I was reading on the screen was what I had, Pel Ebstein Fever. 

But my particular lymphoma with the Pel Ebstein Fever is actually quite unusual, the consultant I saw said he didn't think he'd seen one certainly in the ten years he'd been working in that unit, it's a rather unusual presentation. 

 

She tried various things to relieve her persistent itching before being diagnosed.

She tried various things to relieve her persistent itching before being diagnosed.

Age at interview: 47
Sex: Female
Age at diagnosis: 42
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Well it all started because I had some very severe itching. I'd always had very sensitive skin that very easily itched but I ended up having very, very uncomfortable itching. I described it as being any time, any place, anywhere, basically. And it was so bad that it was debilitating in one way and very embarrassing, and it stopped me from sleeping. I remember in October 2000 we went on holiday to Bronte country and I just couldn't sleep at all in this hotel. And I remember thinking, there must be something really wrong with me, or my skin or whatever. So I tried all the normal things of changing my washing powder and changing, having naturally made fabrics for my clothes and all the obvious things that I knew that the doctor would suggest if I went to see her. But basically it didn't make any difference.

Oh, we also had a very expensive water softener put in because I thought maybe it's because we've got such hard water. And again that didn't make the slightest bit of difference. It's nice to have soft water but it didn't stop me itching. 

So, in the end, after a lot of persuasion by my husband who was sick of sitting with somebody who constantly scratched 'Like a chimp' he said, I agreed that I would go to the doctor. And so I sort of told her all my symptoms and, true to form, she suggested about washing powders and things like that. So, anyway, I told her that I'd done all those things and that it didn't seem to make any difference. So she said, 'Well we'll have some blood tests because', she said, 'If you're very anaemic or whatever you can itch.' And various things. So, I agreed to have these blood tests.

In the meantime she gave me lots of things to put in the bath and creams to put on, some of which did a bit of good but it used to be so bad that I was desperate to have my bath by the end of the day. It was like the one bit of comfort that I had. So it became a sort of a ritual, which is why now I hate having baths because it has an association with them. I do have showers, I hasten to add. 

 

Realised after diagnosis that the tiredness that made her take a year off work had been the first...

Realised after diagnosis that the tiredness that made her take a year off work had been the first...

Age at interview: 48
Sex: Female
Age at diagnosis: 45
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Well I suppose the beginning has got to be before, you know, there's a period that one knows with hindsight was the signal that something was afoot, and for me it started originally, I guess, sort of quite a long time before diagnosis where I was, thought I was just fed up with work, and I thought it was work that was making me tired and listless and all the rest of it. And so I rather foolishly, as it turns out, because I could have got, been a lot more financially stable in illness, but I asked for a sabbatical and I wasn't given one so I just said, 'Sod it, I need the time out' and I took a year off work thinking, 'Well I'll quit my job' and thinking that I'd get something else a year later. 

And so I set off, I think I was, I quit work just before Christmas in 2002 and went off travelling, went off to New Zealand and Australia. And one of the weird things when you're travelling is you never look at yourself in a mirror, I mean I sort of travel like a back packer really so in hostels you never look in mirrors, you're always wearing sort of slightly elasticated comfortable clothing, so I didn't notice I was losing a frightening amount of weight. So I travelled all round New Zealand, got to Australia, stayed with friends and they were sort of looking at me a little bit strangely. And I guess round about sort of early March 2003 I realised that something was a bit wrong and it was just from the weight loss. I had no lumps or bumps or anything so there was nothing to sort of give me a clue as to what was going on. 

And I only had a couple of weeks left of the holiday and I thought, 'Well there's no point in going to a doctor here because they'll run a load of tests and send me home and they'll run a load more tests', so I finished my trip, came home just before Easter. And by then I'd sort of realised how much weight I really had lost, and I'd dropped something like, I think it sort of, I'm still trying to think of how weights work out, so I think I lost something like 20 kilos in about six weeks. I mean I really, and I couldn't sit, you know I sort of was so skinny I had to have pillows put under my bum sitting on hard chairs and everything. 

 

Her breathlessness was caused by fluid accumulating around her lungs. She repeatedly had this...

Her breathlessness was caused by fluid accumulating around her lungs. She repeatedly had this...

Age at interview: 64
Sex: Female
Age at diagnosis: 53
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And on the Saturday night and the Sunday night I'd found when I lay down to go to sleep I couldn't breathe properly, I had to sit up. This seemed to me very funny. I'm asthmatic so I took a bit of extra asthma medicine, that made no difference and it didn't seem like asthma anyway. 

So I was very puzzled by this and on Monday morning, the day before the due date of the biopsy anyway, I rang the registrar at the hospital who said, 'We've got a bed, come on in.' So I came on in, went on the bus carrying a little holdall, slowed down a bit by my breathing. And it turned out that I had something, they recognised this straight away, called pleural effusions. And that is, normally your lungs aren't attached to your rib cage but they abut closely, there's no spare space. Well there's a minute amount of space and that's normally washed through with lymphatic fluid that go, comes in at one end and is drained off at the other. And what sometimes happens in late cancer is that the drainage duct that siphons it off gets blocked with a tumour, and when that happens, or partially blocked, fluid builds up and your lungs can't expand. 

And so they drained my pleural effusion, which was an extraordinary thing, it's, incidentally it's very painful and they routinely don't give you proper pain relief so my advice to anybody is put your foot down about proper pain relief. Say, 'No, no I'm not letting you do this unless.' Because when the little, they put in a sort of coarse grain needle with a plastic tube attached which drains into a jug, and when that tube goes through the membrane that lines your ribcage and lines your lungs, it's called the pleura, when it's inflamed you get pleurisy, when it goes through the pleura it hurts absolutely, it's so painful. But anyway they put in the little tube with local anaesthetic, which isn't enough, you need a bit of morphine going in a vein, and the fluid spurted out and filled up a jug, two pints of this opaque creamy beigey liquid, like weak milky tea came out, which was a great relief. 

When they kept draining your pleura did they have a catheter or something in permanently or did they have to keep putting one in?

Oh they had to put one in each time. It's a sort of wide bore needle and a plastic tube into a jug. And you have to stay sitting up so even if you're exhausted you can't lie down. They do it with you sitting up on the edge of the bed with your chin on your elbows resting on the bedside table which is adjustable in height. In fact when I had that crisis in hospital after the lung operation the very nice anaesthetist who sorted me out said he thought the way they did pleura drainage on the ward was on the border of barbaric. And I thought, 'What a nice chap, he realises that', and it was after that that I started insisting on pain relief, said I'd rather not have the treatment, and of course they want to give you the treatment. So after that I had a morphine infusion going into the other arm, which made it bearable.

Although the neck, armpit and groin are where people commonly first feel a swollen lymph node, lymphoma may occur earlier in other places such as the chest, bowel, abdomen or stomach, where it may cause other symptoms such as pain or gastric problems. Other people we interviewed had had tumours in the abdomen, stomach, chest, spine, leg and eye. Some said that although their symptoms appeared minor they just knew there was something seriously wrong. A woman went to her GP with stomach cramps and had tests that showed her spleen was enlarged and led to her diagnosis, but believes the cramps were not connected with the lymphoma. Other people were found to have an enlarged spleen without being aware of it. Two men had severe prolonged back pain caused by a tumour on the spine. Neither could walk by the time of diagnosis; one was temporarily paralysed and therefore lost control of his bladder, bowels and legs. 

 

A man with a spinal tumour describes his severe back pain and then temporary paralysis.

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A man with a spinal tumour describes his severe back pain and then temporary paralysis.

Age at interview: 57
Sex: Male
Age at diagnosis: 51
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I think my story started in earnest about December of 2000. I had six weeks where I had a pain in the middle of my back and I spent those six weeks trying to fathom exactly what the problem was. For most people that I saw, which included a chiropractor, probably about four or five GPs, an osteopath and various other people, for most of us we thought it was a referred pain from a lower back problem. And I'd certainly had a history of sacral ligament problems so back problem was not totally out of the question. Although with hindsight I realise now that the middle of the back, or the thoracic area, those sorts of severe pains are probably it's a warning sign that there might be a tumour there. 

During those six weeks the pain got worse, we did start to consider that it might be a kidney stone problem or some other sort of possibility. I started just taking painkillers, and I'm not the sort of person who generally believes in pain killers at all, I always believe you should try and find out what the root of the problem is. But I started taking them, and, I mean I had lists of three or four things that I was taking at the same time, and my life started to become, you know, I'd go a little bit out of control really because I wasn't sleeping because of the mid back pain, and I was then regulated as to when I qualified for taking the next dose of painkillers, of four or eight hours intervals. And I think I was on everything from Ibruprofen to Tylex to Voltarol, Diazepam, Solpadeine, I think I tried most of the things that were going. I also tried arnica, hot water bottles, ice - I used so many packets of garden peas that I wore out the labels on them. 

What happened was I had been living in Wales and I phoned up two friends in the south of England and said could I come and stay for two or three days in order to see my chiropractor who I used to see years ago for another, for a, you know, I was going to say second opinion but it was probably, by that time it was probably about a twelfth opinion I think. And it was very, very difficult to make that journey because I really was in a lot of pain. A friend gave me a lift part of the way and then I caught a train and I don't think I sat down on the train, I think I stood up. And then I went to see the chiropractor and the chiropractor said, you know, he actually phoned me back after a visit, after my first visit and said, 'I've been talking to my boss, we think this might be a medical issue rather than musculoskeletal.' They suggested I go to an A & E department, which I did. 

I was examined there, in fact it was, that was just after Christmas so it was during this period, it was the first day of the winter snow and ice and the A & E department was full of teenage girls with 4 inch heels and broken arms. And so I waited about seven hours there and eventually the doctor sort of examined one or two x-rays and various other bits and pieces and they thought it was a musculo-skeletal problem, so I was trapped in going backwards and forwards. And then two or three days later I was still talking to the chiropractor but, well maybe it was about two days later, it was sort of New Year's Eve at the time, when suddenly other things started to happen. My legs started to buckle and I lost control of them, and I lost bladder and bowel control, and I became an emergency patient then. 
 

Other problems experienced alongside the commoner symptoms included visual disturbances and deep vein thrombosis. Some people developed symptoms that mimicked arthritis (painful, swollen joints). Others had rheumatoid arthritis itself for some time before being diagnosed with lymphoma, and our expert, Professor David Linch, explains below how the two conditions can be related. In some cases the lymphoma was found incidentally during the investigation of another problem such as a sore throat.

 

A doctor explains how lymphomas occur and that having an immune condition such as rheumatoid...

A doctor explains how lymphomas occur and that having an immune condition such as rheumatoid...

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The majority of cases of lymphoma arise out of the blue and we really have no idea what the cause is. And in fact in most cases there probably isn't a specific cause. One of the features of the immune system is that it has to be ready to fight off thousands upon thousands of different types of pathogens that are in the environment. And to achieve this the immune cells have a special system when, when they are developing, there is a series of enzymes in the cell that come along, chop up the DNA controlling the production of antibodies and receptors on T-cells that recognise pathogens. It chops them up, changes them and sticks them back together in a different way to create unique entities, this is how the immune system creates diversity. But actually chopping up DNA, altering it and putting it back together is a recipe for creating cancer, and so one could argue that lymphomas are the cost of mankind being able to cope with infections, and that the real issue is not why do people get lymphoma, but why in fact so few people get lymphomas. 

Now, in any system where the immune system is chronically stimulated, the immune cells will undergo more divisions, and as a consequence of that, they are going to be more prone to random changes that could cause lymphomas. So it's well recognised that some chronic infections can lead to an increased risk of lymphoma. And probably the most notable of those is individuals who have chronic gastritis from a particular organism, heliocobacter, and in those individuals there is a greater incidence of getting a lymphoma affecting the stomach. Likewise in Rheumatoid Arthritis and some allied conditions, particularly Sjorgren's disease, which affects the parotid gland, there is chronic immune stimulation, you tend to get slightly swollen glands, the lymphocytes are turning over more frequently, and this leads to an increased risk of lymphoma. It's not a great increased risk, the vast majority of people with Rheumatoid Arthritis, for instance, will not get lymphoma, but there is a statistically increased risk.

Last reviewed February 2016.
Last updated February 2016.


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