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Lymphoma

When lymphoma comes back

In a minority of people with Hodgkin and high-grade non-Hodgkin lymphoma (NHL) their disease relapses after treatment; this is most likely to happen within the first two years of remission. Low-grade NHL is less likely to be cured at present so relapse is common, and people with advanced low-grade NHL are likely to relapse more than once during their illness. Relapsed lymphomas can often be treated and people we spoke to were given chemotherapy, radiotherapy, stem cell transplants, or surgery.

When lymphoma relapses it may occur in the same or a different part of the body from where it occurred originally. Symptoms may therefore be the same as before or different and people may or may not realise their significance. People we spoke to who had relapsed commonly developed swollen lymph nodes in their neck, groin or abdomen, and one had a lump on her eyelid. Others had night sweats, weight loss, tiredness, fever, or breathlessness. One had leg pains, another a pain in his arm due to a tumour at the top of his spine, another said he had a kidney problem causing his urine to look like Guinness. One man's relapse had been detected through routine tests during remission before he noticed any symptoms. 

 

A pilot said the first clue of his Hodgkin relapse was visual disorientation when flying,...

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Age at interview: 41
Sex: Male
Age at diagnosis: 28
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And the treatment was successful at the time, I was in remission, I was in remission for eight years, and very disappointingly, and also quite devastatingly, I relapsed in August, yeah August 2000. Stage 4b this time, absolutely everywhere, and that was a massive shock. It was, I was married at this stage, I was out of the military and in commercial aviation so my life had moved on quite considerably since that time and also the disease had really ripped into me and I hadn't really realised it but when I look back at the symptoms it all fell into place when I was diagnosed. Subtle things like losing weight that I thought, 'Well I'm just getting fit', because I was doing a lot of exercise at the time, but what it was was actually I was eating like a Trojan and it was, nothing was, I wasn't putting weight on, it was quite a, I don't know, it was a subtle thing initially. And then I realised that I was, I wasn't feeling well, I was feeling tired, I was feeling listless, I also started to get the occasional night sweat. And when I pieced everything together in a big pot, so to speak, it then pointed at the disease again.

But it took, I was actually flying at the time when I thought I'd better go and see the doctor. I was descending into an airfield in Turkey and we were going through cloud, the lights were flashing against the cloud as we descend through the cloud, and I got disorientated and in nearly twenty years of, well twenty years of flying I'd never been disorientated in my life, and, not in the way that I was experiencing anyway. So it was a bit disconcerting. I spoke to the other pilot and told him that I was experiencing this disorientation and it was fine, it wasn't dangerous, I just felt slightly off. So I just said, 'Well I'm working through it, I'm still on instruments and everything's fine. 

We descended, we landed, no problem whatsoever. Now if it had got worse I would've just handed control over but I didn't think anything much of it. I had a little bit of stomach pain at the time and I just thought, you know, 'It could be airline food or something'. But that was starting to hurt and when I got back I went into the simulator for another bit of training and then I got similar disorientation again with some of the lights in the simulator, and the different visual cues that I had, I got disorientated again, I felt funny, I felt like I was getting a sort of fluey type feeling as well, and just everything I thought, all the other things combined I just thought, 'Oh well I'll go and see the doctor and see what's going on'. And I had a little nagging doubt in my mind whether this had come back again.

So then that was it. I went to the doctor, he actually found a lump in my shoulder area which I hadn't even noticed. And they whipped that out, did a biopsy and it was the disease again. Also the scan showed it everywhere, absolutely everywhere' it was in my liver and my spleen, not in my lungs that time, subsequently I did discover it in my lungs, but all through my lymph nodes throughout the whole, everywhere above and below the diaphragm, so it was quite extensive disease. 
 

Sometimes when lymphoma relapses it changes from low to high grade. This is called 'transformation'. We talked to a woman who was waiting for a biopsy to find out whether her relapsed tumour had transformed to high grade or was a different type of non-Hodgkin lymphoma altogether. One man had his chemotherapy changed to a more aggressive regimen when it was realised that his tumour had transformed to high grade.

 

Originally low grade, she developed a high grade tumour which grew very fast while she was...

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Age at interview: 64
Sex: Female
Age at diagnosis: 53
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Anyway when I was going back to be monitored regularly because of the chemotherapy tablets I was taking, a little tumour in my groin was looking just a bit bigger than it perhaps should have been. It was, I'd say it was about the size of a Malteser, and that was enough for the surgeon to think well it could be a high grade lymphoma, but to be on the safe side they sent me to a surgeon to do a biopsy. And that was fixed for a bit less than three weeks later. And in that three weeks the tumour that started off as the size of a Malteser grew to the size of a cowpat. It grew absolutely phenomenally and I thought, 'Oh dear, should I get in touch with them and tell them?' And I thought, 'I don't want to be a scaredycat', and I know that one week in the life of a tumour is not a long time, which in fact is almost true almost every time but in my case it was a bad idea because I was due to go in for, on the Tuesday for day surgery to remove this, it had been a little tumour. 

And by then the tumour, I suppose it would probably have been about that big, but because it was in my groin and I spent a lot of time sitting down it was like a cowpat with a fold in it. And it's, you know, you couldn't have worn tight-fitting clothes, it would have been too visible. Anyway if I'd gone a week early I'd have saved all the pleural effusion and it might have made an enormous difference to the whole of the following story. But anyway I didn't and they then had an argument between the surgeon and the oncologists about how much they'd take out. Because the surgeons, they wanted me to start chemotherapy as soon as possible and that meant making the smallest operation they could so that the healing was minimised. But in the event the surgeons who took out, were going to just take out a bit of the tumour, took it all out because it was, had liquified and died, the cells had died in the middle, so it was a bit of a mess. 

But I started, that operation was on a Tuesday and I started chemotherapy on the Friday of the next week, and I had my first chemotherapy on the Friday afternoon and came home that evening. And there was, yes they delayed starting the chemotherapy until they'd got the report on the tumour, was it high grade and what sort? Although it was perfectly obvious it must've been high grade because it was growing so fast. 

Most of the people whose disease had relapsed had started out with low grade NHL but one man with high grade NHL had also relapsed. Learning that your disease has relapsed can be distressing, and particularly disappointing if it happens soon after treatment finishes. However one man with low grade lymphoma said, 'I wasn't totally surprised when they told me. I wasn't shocked'.

 

Had 2 relapses of his high grade NHL and the 2nd time was told he would die but was later offered...

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Age at interview: 49
Sex: Male
Age at diagnosis: 39
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And then it was like, it was actually one day walking the dog round the airfield and it was like running into a brick wall, you just couldn't go any further. And I thought, 'There is something severely wrong', and I started coming up with little bumps on my neck again. And when I saw the consultant he told me, 'It's bad news, we haven't even dented the cancer. It's the exact same the only thing now is it's probably got a resistance to the chemotherapies that we used'. I was then given a choice of managing the disease without chemos, keeping pain under control and things like that, or they had some other chemos that they could try but these chemos would do lasting, well permanent damage to some of my vital organs, my heart, my lungs, things like that. 

I decided to take the treatment because of promises I'd made to my daughter and my partner. The treatment was quite hard, it made you feel pretty yuck but I got another, I think it was about another eight or nine months out of that. Then all the lumps started coming back, I had lumps on my neck here. 

Two years, from 1998 till 2000, I was told, 'You're not going to survive this, this is going to kill you, we cannot stop it with the technology and the medicines we have now.' So I felt sorry for my partner because I mean technically she was living with a dead man, and it didn't matter what she did, in two years time she was going to be on her own. And luckily the something else popped up. But when I was told they'd got something else that could possibly help, it was kind of hard to say, it's not, it wasn't a let down, it was just something very different, it was harder to deal with that than it was to deal with being told you're going to die, because when somebody tells you you're going to die, your pension, bollocks to that, you don't have to care about that any more, you don't have to care about savings. If they're going to send you a thing through the post saying 'Do you want a '25,000 loan?' you immediately say yes. But when they tell you you're going to survive you've then got to deal with all this crap again, and that was quite hard, you know. Well I think it was quite hard for me, I think my partner coped with it better than I did. I think she's coped with just about everything better than I did.

 

At his third relapse a man became depressed because he felt his doctors no longer knew how to...

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Age at interview: 44
Sex: Male
Age at diagnosis: 33
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They obviously felt that because it came back so quickly the second time, the treatment I was having, anything that I was having wasn't working, I seemed to have a body that was fighting everything that they was giving me, and I think it sort of shocked them in a way that they didn't really know what to do then. Because I'd had all the mainline treatment that was going, all the aggressive treatment, the stem cell transplant using my own stem cells, and the only other option open to me then was a bone marrow transplant using a donor. Because their policy is that they don't normally use the same treatment twice so, you know, they was trying to think of ways, what was the options open to me. 

So it got to the point where I was getting a little bit anxious because I could see that the consultants didn't really know what to do at that stage, they didn't really know what avenue to go down, you know, treatment-wise. So I suppose it, I was getting a little bit, I got a little bit down and things started going a bit, you know, I sort of went off the rails a little bit, I was getting frustrated and I was getting depressed because I thought I'd beaten it and then it came back again, and I suppose I was feeling that the consultant, I could see the consultants, you know, when they get a little bit, when they started getting confused as to what to give you as treatment, I think it rubs off on, as a patient, you know, it rubs off, you sort of come away thinking, 'Well they don't know what to do with me now, what's going to happen?' 

So at that particular time I needed to speak to someone and my local authority got me in touch with a counsellor, which I started seeing, who was an expert in cancers. So I then started seeing her and that was great, just what I needed at that time. And she said, 'Look, don't worry, there's loads of things out there and they're just obviously, they're just like waiting to see what could be available.' And I just remember them saying to me that it was quite unusual for someone to relapse so quickly after having a stem cell transplant, you know, especially in someone my age, they don't normally see it. 

People with Hodgkin lymphoma also sometimes relapsed. One felt irritable and aggrieved that she would have to go through treatment all over again. 

 

Was angry at having relapsed and wondered whether he could have been given stronger treatment the...

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Age at interview: 46
Sex: Male
Age at diagnosis: 29
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About a year later I received a letter from the people who'd done, or from my consultant saying that, you know, congratulations I am now one year after my treatment had finished, which is indicative of good progress, and you're not normally declared clear until after five years but after one year with no relapse it wasn't a problem, and about two weeks after that I had my first night sweat, second time around. And then as soon as I had a night sweat I knew this was, what it was. So I went back straight away and then they did a scan and at that point they said it had then spread to my lower body as well as being back in my upper body so obviously the radiotherapy hadn't worked the first time around. It probably worked 95% but it had come back. 

So I then had to, I discussed the options with the consultant and really it was I had to go through chemotherapy the second time around, and they thought chemotherapy would do the job. So at this point I started thinking, 'This is a bit more serious than it was before'. But I must admit at the same time it was, even though it had spread it was still considered to be early stage, and I never thought I was going to die or anything, it was only, I never really thought of it as being cancer, you know, the types of cancer that kill people, it was just an obscure type of cancer which they cure but the problem was that they never gave me the correct treatment the first time around, and if they'd done it the first time around it would all have been gone by now. 

Well I think, in retrospect, at the time I thought it was just going to be a little bit more of the same, maybe worse, but I think, you know, deep down I was very unhappy about the fact that' A) they could have got me the first time round by giving me radiotherapy to a larger area of my body if that was possible, or they could have given me chemotherapy the first time around. The fact that I'd had a relapse was something which they previously declared as 'early stage easily fixed', I think I was probably as angry about that as about the fact that it had come back again. The fact that it didn't have to have, I didn't have to have had a relapse, they could have given me more stringent treatment first time around, but the diagnosis as it was, as they understood it and as it was explained to me, was that this was all the treatment that was required to fix the problem as it was then. So I think I was quite unhappy about that. 

Not that I ever actually said it to the consultant, but with hindsight I think that was the thing I was particularly unhappy about. And if, with hindsight I would have asked more questions first time round, is this a guarantee, is it worthwhile? If it had been explained to me that, you know, they could have given me stronger treatment I could have said, 'Is it worthwhile?' I wasn't told what, say, the relapse rates were, for instance. Maybe there was a 1% chance of relapse, maybe there was a 20% chance of relapse, and if I'd been given that information and they'd said, 'OK you only need this but there's a 10% chance of relapse,' I'd rather go with the 1% chance of relapse than the, and stronger treatment first time round or maybe chemotherapy first time round.

A woman whose Hodgkin lymphoma was originally diagnosed when she was 19 relapsed two years later, and 20 years later she became ill again and was diagnosed with non-Hodgkin lymphoma. 

 

Originally had Hodgkin but became ill again after 20 years and was diagnosed with non-Hodgkin's...

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Age at interview: 41
Sex: Female
Age at diagnosis: 19
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And then my biggest experience of lymphoma happened after my little girl was born. She was about six months old and I was losing a lot of weight, which I put down to the breast feeding, and I thought that was OK. I was feeling quite tired and poorly, which again I put down to having had a baby and a young toddler running round as well. The main symptoms that I then noticed were the night sweats where I was getting dreadful fevers in the middle of the night and peculiar cramps in my legs which were waking me up in the night, I was getting incredible pains in the back of my legs at night, leaping out of bed really in agony, didn't know what this was, what was going on, went to see my GP and he said, 'Well I think you'd better go back to the oncologists who saw you when you had your Hodgkin's disease and get it checked out.' 

So I went back to them and I could see in their eyes immediately that they knew what was happening, which was that I was relapsing again. And they sent me off for a CT scan. And sure enough I came back with a diagnosis of non-Hodgkin's lymphoma. Now at that point I had two kind of experiences in my brain' one was the horrendous experience of my Dad having been ill with it, so I knew that non-Hodgkin's was possibly a bit more scary than the Hodgkin's that I'd had before; but also I'd had a very positive experience with my last treatment of Hodgkin's, so I wasn't sure whether I was just going to take six pills and be fine, whether the technology had moved on that much, or whether things were going to be quite hard. So it was a bit of a period of not knowing what was going to happen next.
 

In February 2008 NICE approved rituximab for treatment of relapsed stage 3 or 4 follicular non-Hodgkin lymphoma, in combination with chemotherapy. For more information about rituximab see 'Immunotherapy'.



 

Last reviewed February 2016.
Last updated February 2016.

 


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