Lymphoma
Tests, investigations and surgery
Various tests are used to diagnose lymphoma and to assess its aggressiveness and spread. While initial tests may reveal lymphoma, further tests may be needed to determine which of several types of Hodgkin or non-Hodgkin lymphoma it is. Patients with lumps or enlarged lymph nodes usually have a biopsy. This involves removing part or all of a lump under a general, or sometimes a local anaesthetic, to examine the cells under a microscope. Occasionally people may have cells taken from the lump using a needle (although a more definitive biopsy is still usually required after this). A CT scanner or ultrsound may be used to guide the needle.
Had a lump removed quickly and painlessly under local anaesthetic.
Had a lump removed quickly and painlessly under local anaesthetic.
Did they do that under day surgery?
Yes it was very quick. When, it was arranged to see the surgeon for the biopsy, I actually, I was in hospital three times that day, I saw the rheumatologist in the morning, I saw the surgeon at 2 o'clock and the surgeon actually, whilst we were in there he said, 'Well hang on, I'll make a phone call,' and he went into the next room, came back and said, 'Right, we'll do the biopsy 4 o'clock this afternoon.' So the biopsy was done the same day. It was done under local anaesthetic. Luckily we're within walking distance of the hospital so we actually left the hospital, came back home, had a cup of tea, went back to the hospital, had the biopsy done and took about half an hour, an hour, I think it was a very, very quick process. They just, he literally just made a small incision on my neck, took it out, a couple of stitches and done. It was remarkably quick and painless.
The apparent urgency with which tests were done could be alarming. One woman was worried to hear her surgeons discussing how quickly her biopsy should be delivered to the laboratory. A woman recently diagnosed explained that not enough material was taken from her first biopsy so a second was done under general anaesthetic leaving her with numbness around her jaw which she hoped would disappear in time.
People whose only enlarged lymph nodes are in the abdomen or chest may need more extensive surgery under general anaesthetic to obtain a biopsy. Once opened up, more tumour may be found than initially suspected. A man who had expected to have one lump removed from his neck was told by his surgeon, “I went on and on finding more”. Another man had 'a mass of tumours' removed from his abdomen. A woman whose chest lump was biopsied was left with damage to the nerves and muscles of her arm (this is not a typical outcome).
Was initially told that abdominal surgery might be necessary to biopsy his enlarged abdominal lymph nodes but was relieved to learn later that a node in his neck would suffice.
Was initially told that abdominal surgery might be necessary to biopsy his enlarged abdominal lymph nodes but was relieved to learn later that a node in his neck would suffice.
So on the Monday it became clear there was additional complications associated with the lymphoma. Normally one of the things they have to do is to take a biopsy of the tissue to establish exactly the specific type of lymphoma it is. And it's, at first the, I was led to believe that they would be able to do that using, I'm trying to think of the word, keyhole techniques. But it became obvious that it could entail an operation because the lymphoma was deep within the abdomen. So I was, I got a little bit worried about that because I was now facing abdominal surgery.
But fortunately while I was in hospital one of the consultants noticed that there was evidence of lymphoma on my neck and he thought it likely that they might be able to get the biopsy from my neck and therefore I wouldn't have to go through the operation. So I went down to the radiologist again and he had a look at the abdomen, he had a look at the neck, and he said, 'Well yeah I think I can take a biopsy from your neck.' And I was quite relieved.
Had surgery to remove a kidney thought to be causing his persistent urinary infections but was found to have several tumours nearby.
Had surgery to remove a kidney thought to be causing his persistent urinary infections but was found to have several tumours nearby.
It started with UTIs, urinary tract infections, and having had three and being male, the GP thought that was unusual, and I was referred to a specialist urologist who spent some months putting me through a whole load of tests, some very peculiar tests, I have to say, along the way. And eventually the decision was taken, because I was still deteriorating and they hadn't yet found any particular reason why I was so ill, they decided to remove my left kidney, which apparently from birth had been pretty small anyway and not of great use, and they deemed that to be the likely source of the infection. So in early January 97 I was taken in for an operation to have that kidney removed.
As I recovered from that in hospital I awaited the results of the biopsy, which seemed to be coming through fairly slowly, and then the consultant surgeon returned and said to me that when he opened me up he discovered that the problem was not the kidney and in fact the kidney and around that area was surrounded by tumours, which were, with a biopsy to demonstrate that it was some form of lymphoma.
A man whose disease recurred at the top of his spine had an operation to remove an affected vertebra and biopsy the tumour. A woman who was initially diagnosed in the 1980s had an operation called a staging laparotomy to find out how far her disease had spread, which included removing her spleen (scanning has significant improved since then and this is not done today). A man with persistent tonsillitis had his tonsils biopsied during a tonsillectomy. One man's lymphoma was wrapped around one of the vertebrae in his spine causing the bone to go soft and disintegrate. He had surgery to remove the entire tumour and the affected vertebra and to reconstruct his spine using a metal cage. Using surgery as treatment for lymphoma is extremely rare unless it has caused complications such as bowel obstruction.
It is common for lymphoma to affect the bone marrow (the jelly-like substance in the middle of bones) so the bone marrow may be biopsied by inserting a needle into the hip bone to take a sample. It is usually done under local anaesthetic although some people had it under a general. Many people feared that this would be worse than it was - one man postponed having it for several days, although the actual test was not too painful. While some people described the test as momentarily painful, for others it was extremely painful despite the local anaesthetic. Some said they could hear and feel the pulling and pushing of the needle in their hip bone. Those who glimpsed the needle were alarmed by the size and some wished they hadn't looked. Some people were offered gas and air or a sedative to relax them before the procedure and make it less uncomfortable. The pain was usually brief and most described only mild discomfort after the anaesthetic wore off; standard painkillers relieved it.
She saw the size of the bone marrow biopsy needle and could feel and hear it being pushed into the bone despite the local anaesthetic.
She saw the size of the bone marrow biopsy needle and could feel and hear it being pushed into the bone despite the local anaesthetic.
Tell me more about your bone marrow test because you said that was really, really painful. I've heard other people say it didn't bother them at all, so tell me what was so awful about it?
OK, so they obviously can numb your skin but the needle is huge and I stupidly looked at it, which maybe I shouldn't have done. But you can feel them, like you can hear the sort of noise of it going into your bone and you can feel it pushing down into your bone, and I think, like maybe I tensed up because it was just like, it wasn't painful it was just really uncomfortable. And afterwards it felt like you'd just been kicked in the hip by a horse or something. It was just, I just remember that's one of the things that really stands out in my mind, from all of it. Like the chemo I don't really remember that, but it's the bone marrow test that's really one of the things that stands out.
Was it sore for a while afterwards?
A couple of days but, you know, it just was bruised, like really bruised.
Has had many bone marrow biopsies and explains why he prefers having them under sedation rather than local anaesthetic.
Has had many bone marrow biopsies and explains why he prefers having them under sedation rather than local anaesthetic.
You said you had a bone marrow biopsy done. What was your experience of that?
Well I've actually had several now over the course of the years. Someone said at the hospital recently I was kind of going for the record. I think I've now had probably close to fourteen or fifteen bone marrow biopsies and it would be easier just to leave a little tap in there really wouldn't it? It was fine, the very first one, again not quite sure what to expect. I was given heavy sedation and so I just basically nodded off for fifteen / twenty minutes. Woke up, all was done, a small plaster stuck on the puncture mark in my back, a day or so of an aching back and then it's OK, it's not distressing.
I'd had one where because of a mix up in communications I had actually eaten on the day they were going to do it, because they hadn't, they'd told me the wrong day, and so I had one under local anaesthetic rather than sedation. Which was slightly more difficult in so much as the local anaesthetic certainly numbs the pain but it's still fairly distressing, you have to grit your teeth. But it's fifteen seconds, I counted, fifteen seconds and when it's finished there is no after effect, no recovery, you're OK.
But generally I always, with all of the other ones I've had sedation, which is simply a needle in the back of the hand. It's done in operating theatre. I generally, because the hospital know me well, because I've been going to so long, I walk to the operating theatre I just kind of follow the bed down, hop up onto the bed, chat to the nurse whilst the injection goes in and wake up some time later recover and go home. And it's, again it's one of these things you tell people you have a bone marrow biopsy and sort of alarm bells, they assume that it's awful and it's dreadful and that you're going to be in pain, and simply you're not, it's very well managed.
Described how different doctors took bone marrow biopsies with her lying in different positions, which affected what she could see of the procedure.
Described how different doctors took bone marrow biopsies with her lying in different positions, which affected what she could see of the procedure.
And the idea is' I've had two sessions, I don't know how much detail you want, but twice I've had the bone marrow taken out and a bit of bone as well, by two different consultants because the first one did go on leave [the job], which was also fascinating because they did it different ways. And the most' the thing that has nothing to do with how it felt at all, was that the' that one way of doing is where you lie on your side, curled up, and everything's done behind you so you can't see a thing. But the other way of doing it is where you're actually lying on your front, which means that you can see everything that's going on at the side, which is, if you've got a sort of' if you're a bit squeamish like I'm afraid I still am, despite all the blood that I'm having taken and stuff, is not very nice to see all these bits of bone marrow being squished out onto pieces of glass.
You said you had a bone marrow sample taken twice?
Yes.
By different doctors?
Yes, yeah.
And done differently. Was it painful at all?
Not as much as it's made out to be. I think when I first heard about it and read about it, people said it was going to be this awful thing. But in fact, I mean, particularly the first time I had it done, she was quite amazing. I often wish that they didn't explain everything because you sort of, then the anticipation is worse than, than it actually is, which is maybe why they explain it. But she was wonderful and put loads and loads of anaesthetic in and the moment it started hurting when she actually did the bone, took the bone out, trephine I think it's called, then she stopped and she had enough anyway. But the, no, neither time is it really painful. It's, if it is, it's momentary and thank goodness you don't remember pain.
Is it sore afterwards when the anaesthetic wears off?
No. No, not at all.
Further investigations include blood tests, x-rays and scans (MRI, CAT or PET). An MRI scan involves lying still on a couch inside a metal tube that is open at both ends. The machine is noisy and some people feel claustrophobic and find the experience unnerving or frightening. Several people said that their experience of a CT or CAT scan was better than they had expected because the doughnut-shaped scanner caused less claustrophobia than the MRI tube. One man likened it to passing through a washing machine. People may be asked to starve for a few hours before a CT scan, but for many people the worst aspect was having to drink large volumes of a bitter tasting fluid and having an injection that leaves a strange, warm, wet feeling (as if they had emptied their bladder). People also had to resist the urge to empty their bladder until after the scan. Some received an injection instead of, or as well as, a drink. People were unnerved by both types of scan and found it difficult to lie still and follow instructions about when to take breaths. However, some of the people we talked to who had PET scans were given diazepam (Valium) to make them relax so they could lie still (though this is not standard practice); some said they were not very aware of the procedure and one even fell asleep because the room was dark.
Had an MRI scan of his head and neck for which he felt unprepared; he hated the noise and felt claustrophobic.
Had an MRI scan of his head and neck for which he felt unprepared; he hated the noise and felt claustrophobic.
And I forget what prompted them to say have an MRI scan, and precisely when it happened, a bit later on I think, but I went there, it was just another scan, but it wasn't, not by a long chalk. And until I actually got into the thing and it started I didn't know what it was going to do, I mean I had no idea I was going to have this shattering noise through my head. Which was their intention I think but I know it's doubtful which way to do it, yes, to inform the patient or not.
In terms of telling you what's going to happen or not telling you?
Yes to warn you about it.
So there was a very loud noise, what else was it like having this scan?
It was' it, for one thing it took much longer than I expected. You're eased into a tunnel in the machine that is very warm and not easy to breathe freely. And then your head is clamped, which again all adds up to the makings of claustrophobia. And then this very considerable noise starts, which went on in my case with a brief pause of about a minute in the middle for an hour and a quarter. And at the end of it all they have a series of pictures of one's brain which are quite remarkable.
Describes his first CT scan and having to drink a special fluid and have an injection that made him feel strangely as though he had wet himself.
Describes his first CT scan and having to drink a special fluid and have an injection that made him feel strangely as though he had wet himself.
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 not 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. And you have to get through kind of four cups in like over two hours and it's like a big litre and you're just kind of forcing it down and 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 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 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'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 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 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. So it's kind of bizarre kind of feeling when this injection goes into you.
But other than that it's pretty harmless really, and that's the CT scan and that gives you a kind of rough feeling of where the illness lies sort of on your chest and on your pelvis and you know, it basically runs through the whole body.
Describes taking diazepam and feeling relaxed and sleepy during her PET scan.
Describes taking diazepam and feeling relaxed and sleepy during her PET scan.
In addition to being used to make the initial diagnosis, tests like these may be used during and after treatment to determine its success, and during routine follow-up, as well as to investigate suspected recurrences. Other investigative tests undergone by people we talked to included: throat swab, electrocardiogram (which is used to check for problems with the electrical activity of the heart), lung function test, bronchoscopy (to check the airways), endoscopy (a test to look at the inside of the body – most commonly the digestive system), bone scans, lymphography (to look at the lymph nodes but it is rarely used now) and an HIV test. Echocardiograms (heart scans) are also commonly done.
Test results can take days or weeks to arrive and even a short wait is often difficult. A woman said that waiting two weeks for her biopsy results had been worse than any of the treatment. Some people had been told what the results might show or reassured that lymphoma was treatable, while others had been left in the dark. The stress of waiting was sometimes compounded by results not arriving at the promised time. A few people were unconcerned while waiting for their results because they didn't think anything was seriously wrong: one went on holiday, another almost forgot to get the results.
Tried to pretend to her family that all was well while she waited for her scan results, then attended clinic twice for her bronchoscopy results but they weren't available.
Tried to pretend to her family that all was well while she waited for her scan results, then attended clinic twice for her bronchoscopy results but they weren't available.
So I went and had my scan and that was fine. I'm a bit claustrophobic so I was sort of wondering what it was going to be like but it was absolutely fine because it's open at both ends, so, that wasn't scary. So it was a matter of just going home. Of course it was a Friday so I had to wait over the weekend. I remember going out with the girls to some gardens and trying to sort of pretend it was all fine and we were having a lovely day. And that was really hard because always in the back of your mind you were thinking, 'I don't know what it is.' And obviously they were treating me very kindly at this clinic and I just thought, 'I bet they're looking at me thinking, 'She's so young, or relatively young, and not smoked and what a shame she's got lung cancer'.' Because that's what we were assuming. So I had to wait for the results. I don't remember quite how long it was but it seemed like forever.
So I then went and had the bronchoscopy a week later, which was uneventful. And but then I had to wait a good while. I don't remember exactly how long but it was well over a week. I think it was up to about two weeks before I knew. So the first time I turned up to the hospital, our local hospital, for the results they couldn't find them, they didn't know anything about them. And so I'd waited for about two hours, waiting for this, you know, thunderbolt and it never happened.
So I had to go back again, waited three hours this time, on my own, waiting for these results and again there were no results but they said that what they would do is really try and sort them out, and that they would ring me. And depending on what it was either the chest specialist would ring me or it, they said it could be lymphoma, in which case the consultant haematologist would ring me. So it was kind of a matter of seeing who rang me as to what it was.
Waited a week for his biopsy results but had already been told that lymphoma was the most likely outcome.
Waited a week for his biopsy results but had already been told that lymphoma was the most likely outcome.
And how long did you have to wait for the results? You said you thought everything happened quite quickly?
It was all very quick, I think it was the following week and that was, it was Tuesday, all the hospital appointments seem to be Tuesdays, I don't know if they have six times the number of staff on a Tuesday in the hospital or something, but it was the Tuesday that the biopsy was done, I think the following Tuesday I was back in and given the diagnosis.
Did you have any idea what it might have been while you were waiting?
We had an idea yes from the first time I was referred to the consultant, when they examined me and they did say that in all likelihood for age group and symptoms that I was showing, it would, the most likely thing was a lymphoma, be it Hodgkin's or non-Hodgkin's. So based upon that we knew that was the most likely outcome.
Last reviewed February 2016.
Last updated February 2016.
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