A-Z

Lymphoma

Knowledge and information

Many people diagnosed with lymphoma had no prior knowledge, or even awareness, of the disease. As one person said, 'they all gathered round and they said, “It's non-Hodgkin Lymphoma.” And I didn't know anything about it, I didn't know whether to be pleased or displeased.' Some did not realise that it was a form of cancer until they found out that they were going to be treated with chemotherapy (see 'Learning the diagnosis and treatment plan').

 

Still knows very little about lymphoma and has been happy to trust that he will be OK; to his...

Still knows very little about lymphoma and has been happy to trust that he will be OK; to his...

Age at interview: 64
Sex: Male
Age at diagnosis: 62
SHOW TEXT VERSION
PRINT TRANSCRIPT
When they told you, you had lymphoma had you ever heard of it before, did you know what it was?

No I didn't know what lymphoma was at all. And I still don't know what lymphoma is. And at the time they did explain to me the various levels of non-Hodgkin's Lymphoma and they probably explained non-Hodgkin's in, just lymphoma, but I didn't pay an awful lot of attention to it. Don't ask me, I don't know why. I didn't feel too concerned. I would have picked up from the doctors if there had been a real problem, I'm sure I would have picked that up from them and it wasn't them just sort of saying, 'Well no you're going to be OK' as I would expect them to say. I felt everybody was very, very truthful and very sincere and very real about it, so therefore I didn't worry about it.

Did they give you any written information to take away?

Yes they gave me a leaflet, which I did read. And my daughter had a friend who, strangely enough, took exactly the same thing at exactly the same time, and he was just a young man, he was in his thirties, yeah late thirties. And he had some further, he had got some information off the Internet and my daughter copied that to me as well. And it all seemed to fit in with what the hospital were telling me so that was OK, that was fine.

Mm so did you feel you had enough information or would you have liked more or did you not want to know or, you know, how did you feel about information at the time?

I thought I should really, really research this, that's what I thought. I thought, I mean because if this was something in my work environment I would have researched it, I would have known it from A to Z. But what they gave me was general, I could see right away that it was a bit simplistic but I didn't feel that I had to know very much more. I may have wanted to know more had the diagnosis been more serious or if the treatment hadn't been successful, but other than that'

People who did know something about lymphoma usually knew another person (a grandfather, a father-in-law, a friend-of-a-friend) with the disease or had read about it in a magazine. Once they had their own diagnosis several commented that their friends and acquaintances started telling them about other people who had had it - often encouraging if the person was now well (see 'Other sources of support'). 

The doctors and nurses involved in the care were often the most trusted sources of information, giving clear and detailed verbal explanations, although some people felt that they were given only the information they asked for. One man explained that doctors do not have time to cover everything - and if they did it would be impossible for the patient to take in. Making a list of the questions that they wanted to ask before the consultation - and perhaps taking a friend or family member to the appointments to help remember the answers - could help a lot. Some consultants encourage patients to bring a tape recorder to record the conversation. Many families and friendship circles include someone who works in health care who will often be asked to help interpret medical information. A woman whose parents and sister were all doctors had some of her most useful discussions with her sister and with her own GP. 

 

Has had a lot of information via the clinic; he and his wife plan their questions for the...

Has had a lot of information via the clinic; he and his wife plan their questions for the...

Age at interview: 58
Sex: Male
Age at diagnosis: 49
SHOW TEXT VERSION
PRINT TRANSCRIPT
So you mentioned leaflets and things, did they give you lots of written information when you were first diagnosed for you to take away and digest?

They gave me some. A lot of them I collect when I attend the Haematology Clinic. There's no shortage of information but, and well I suppose given my background I'm inclined to sit and read things and digest information that way, so yes I made good use of them. I think it's getting better, I mean it proves, as I say I've had it for nine years now and there's a wealth of information really. 

I think generally I would say the staff have always been very good in answering my questions. I think as a patient it's sometimes difficult to think what the right question is, and indeed my wife and I were just talking last night that before I see the consultant in a week or ten days' time, that we'll sit down and think through the sorts of questions we may want to ask. But clearly as he talks through the prognosis and so on there may well be something you think afterwards you walk away and think, 'I wish I'd asked him that'. Having said that, I know I can lift the phone and ask the question, so I don't feel I've walked away from getting the answer. You do sometimes feel you walk away and think, 'Oh I should've asked what the implications are'.

Many people were given leaflets at the hospital about lymphoma or about specific treatments, and some were also told about national support organisations. Information about the specific treatments was usually given shortly before the treatment started - which was a relief to some because learning about the diagnosis, the illness and the treatments all at once could be daunting. A few people had wanted more information than they were given. Some didn't remember being given any written information and found it for themselves.

 

Was given information about lymphoma first, and about the chemotherapy and side effects later -...

Was given information about lymphoma first, and about the chemotherapy and side effects later -...

Age at interview: 67
Sex: Female
Age at diagnosis: 67
SHOW TEXT VERSION
PRINT TRANSCRIPT
So you had quite lot of information, did you feel it was about the right level of information or did you want more or was it too much?

I would say that was about the right level. I was glad they didn't give me information about chemotherapy and its possible side effects until later, because I had some time to try to digest what I had been given. Although I had quite a bit of information and I felt it was adequate, I still did have a look at the Cancerbackup website, Lymphoma Association website and the Oxford Lymphoma Group. And that was useful and I did find additional information and I guess it all helped me to feel that, well it's almost a common everyday occurrence. But I have relied most heavily on the information I was given at the hospital. Even then there was quite a bit to take in because the side effects can be different in different people and I was expecting, 'Well I might be this, I might be this, I might have this and I might have that', then when it came down to it I had very few.

And when did they give you the information about the chemotherapy, because you said you didn't have that straight away?

That was given to me when I went to the hospital for the bone marrow scan at the haematology unit and I met the registrar and the nurse there and she showed me, while I was in the day unit, the waiting room, told me it was quite a relaxed atmosphere in there, and there were patients having treatment sitting in chairs with drips in their arms, so that was when I was given the information about chemotherapy, which was two weeks before my treatment started.

 

Was given a booklet about the chemotherapy and, later, another about stem cell transplants, but...

Was given a booklet about the chemotherapy and, later, another about stem cell transplants, but...

Age at interview: 47
Sex: Female
Age at diagnosis: 42
SHOW TEXT VERSION
PRINT TRANSCRIPT
I did seek out information. I was given, at the hospital I was given information, a booklet about chemotherapy, I think it was a Cancerbackup booklet, and I also was given one about stem cells, obviously, as that became appropriate, I wasn't given it straight away obviously. To be honest, most of the information that, I either had to ask them or read up or, well they were the sources of information. I don't honestly think that I was given as much information as maybe I would have liked, but there are so many things that go through your mind when you're being given the news, and whilst I always sort of braced myself and I used to go to the appointments by myself, and I'd have a notebook and write certain things, but after a while you began to get the impression that, well, 'I'd better not ask any more'. Not that I was treated unpleasantly at all but I did find that you only are given answers to your questions. So if you don't ask, you're not told, basically. And I think probably that's because some people don't want to know. I made it quite clear that I wanted to know everything, good, bad or indifferent. 

Did you come home and look on the Internet? Or did any of your family do that?

No. No. We didn't. I never looked on the Internet. No. To be fair, at the time we didn't have broadband so it was probably more laborious, but no, I didn't. I read the information that was given to me but I didn't look it up. I think sometimes, I don't know, I just felt, I didn't want to be informed about symptoms that I may never suffer. And so I kind of thought, 'I'll just find out as I go along.' So that was my approach. It's not everyone's approach but that was mine.

A wide range of information is available through the internet, books, leaflets, videos, Maggie's Cancer Caring Centres, voluntary organisations and help-lines (see 'Resources' section). There are facts and figures, details about treatments, advice on prevention and management and personal accounts from other people with the condition. Some people recommended finding out as much information as they could to help feel in control, but others did not want all the information at once. The Lymphoma Association was mentioned as a good starting point.

See our information on treatment-induced infertility.

 

Used the library at the Maggie's Centre and looked up her proposed treatments on the internet -...

Used the library at the Maggie's Centre and looked up her proposed treatments on the internet -...

Age at interview: 48
Sex: Female
Age at diagnosis: 45
SHOW TEXT VERSION
PRINT TRANSCRIPT
I'm an information junky, yes. They were very good at giving me sort of some basic information at the hospital and then again what is now the Maggie's Centre has a very good library so I went trotting off there and got a few books out because again I sort of, I think it was the days before broadband so I used books more than I do now. And that was nice because they had a library and you could take whatever you liked out so I immediately grabbed all the books on food and everything and used the internet a lot. I think actually one of the things I did use my critical illness cover for was to get broadband early. I also used it to buy a wide-screen television and a nice leather sofa because I knew I'd be spending a lot of time watching TV lying on a sofa. 

And so the internet was a huge source of information for me and I think if the DIPEx site had had this section I would have been watching it avidly. There is a lot of information out there if you want to find it. I mean there are, I think there are some sites that are particularly accessible but I even got to the extent of I was reading journals, you know, medical journal papers and research papers and, well I wasn't reading the whole paper but they usually have a nice little summary at the beginning that tells you basically what the research has found out, so you don't need to read, understand anything because the summary two sentences are written in pretty plain English. 

But I think one of the great things is again we can deal with it in the way we want, the information is there if you need it and if you don't want to hear it it's not thrust at you. I mean I keep thinking it would be useful to have a sort of slightly more specific collection of web addresses and page addresses that we keep, actually it's one of the things that we as a support group think of doing is actually making the list of the sites that we used and which pages within those sites that we used, accessible to people. We may get around to it.

I mean the thing that used to really irritate was when we were doing the chopping and changing of treatment, because there was actually some talk of me having some other treatment at some point, and I went off and researched it, because the first thing I used to, you know, write down what I was going to be given, come straight home and look it up on the internet. 

Using the internet for health information is becoming routine, especially for younger and middle aged people who had been recently diagnosed - some said that 'of course' the first thing they did was to go on the internet. Many sites have information about the disease, treatments, clinical trials and papers from medical journals. People were advised to ask their team for recommended sites or take care that sites were reputable.

 

Warns that information on the internet can be confusing, weird and wacky, and recommends sticking...

Warns that information on the internet can be confusing, weird and wacky, and recommends sticking...

Age at interview: 45
Sex: Male
Age at diagnosis: 45
SHOW TEXT VERSION
PRINT TRANSCRIPT
I think it's quite easy to confuse people and so everyone has a slightly different approach to how they get information which is highly pertinent to them, if they've got something serious like lymphoma.

And my own style, as it were, is to actually seek advice from one source, because I think if you go onto the Internet the Cancerbackup site is excellent and there's one called DIPEx, which is where you are now, and there are all sorts of things on the American websites where it's all jumbled up, so you'll get some excellent stuff from the sort of national cancer agency which will tell you all about the American treatments for cancers, and there is some wacky stuff about snake oil basically, and it's all jumbled up. So if you trawl too much on the Internet, A) it'll scare the pants off you because there'll be lots of stuff from people that are worse than you are, have different prognostic factors, you know, things that means that you're likely to have a worse time of it and your chances of survival are lower. 

And also you've got all these various things which are going to confuse you because, you know, opinions do differ, and it was my worry that if I went into this in too much depth I'd be saying, 'Well why do I need bleomycin, would something else do?' And we'd end up having a discussion about some sort of tailored treatment which may not have the good results that ABVD as a package has, because it's extremely well proven, and it gives me great confidence to know how many people have had it over the years, and coped with it and survived it. Some people even manage to work part-time when they're actually having chemotherapy of this sort.

People diagnosed several years ago felt that communication and information were much better now. Treatment has also improved enormously over the decades - those who had seen old medical textbooks, or outdated booklets, had been rather alarmed.

 

Was shocked to read a low estimate of her life expectancy in a book in her GP's waiting room;...

Was shocked to read a low estimate of her life expectancy in a book in her GP's waiting room;...

Age at interview: 63
Sex: Female
Age at diagnosis: 42
SHOW TEXT VERSION
PRINT TRANSCRIPT
Again I'd just like to think that things have changed. I know that there's more information, and there's another thing actually I told the doctor, about two years on actually I was in the doctor's surgery, the local doctor's surgery and I lifted a book that was about, information about cancer. It was probably about three years on, no I tell a lie it was only the year after, because I was still very vulnerable. And I lifted this and at the back it had a list of all the cancers and the potential life expectancy. I mean this was sitting in a doctor's surgery. And I thought, for some reason I thought Non-Hodgkin's and low grade lymphoma was actually, you know, I was probably', less dangerous than others and I got such a shock when I read that I had a five year life expectancy, and this is only a year after becoming very positive and getting over the cancer' And it absolutely floored me, it knocked me for six for a few weeks. 

And it was only a few years later on that I remember speaking to the doctor and saying to him, 'You know that book really upset me'. And he went straight through and took it out. But this was sitting in a surgery, and it shows you, you put the exterior, the exterior is very confident and positive but you're still so vulnerable for such a long time. And I mean to have something like that. They're so, they have no idea, they must learn I think, I think people sometimes die before they need to because they're so scared, because they haven't been given the positive vibes. I'm sure folk who are borderline could probably survive actually with the right treatment, the right mental attitude and support.

Not everybody wants to find out everything that they can about their illness and several people had decided to avoid seeking out information because they didn't want to find anything negative or frightening. Sometimes a spouse or adult child did the internet searches and read the books - and they might be asked not to tell the 'gory details'. A man who stumbled onto internet information that he would rather not have seen decided not to search again. Others had had no desire or need to look for information because they preferred to place their trust in their doctor. A man whose doctor's manner reassured him had not wanted to seek out more information although he was the type of person who usually would (see interview 31 above).

 

Had enough basic information about her lymphoma and did not want to know more that might not...

Had enough basic information about her lymphoma and did not want to know more that might not...

Age at interview: 59
Sex: Female
Age at diagnosis: 55
SHOW TEXT VERSION
PRINT TRANSCRIPT
So when you were first diagnosed did they give you at the hospital any written information about non-Hodgkin's?

I got several little booklets, which I read. It didn't specifically deal with follicular non-Hodgkin's Lymphoma, which is what I've got. I got more information off the Internet as regards to that particular lymphoma. That's really all the information I needed at the time, I didn't feel that I needed any more information. Perhaps I wanted to stay ignorant about any of the really drastic things that could happen if I was more advanced with the disease, but as I'm not I didn't feel I wanted any further information. I know that's putting your head in the sand but I really, really don't feel that it should be a total focus of all your life and everything you do just to be focused on that.

No.

I don't know how worthwhile that is to pass on to other people.

Very.

But we get bombarded with so much information in the end you don't know what is relevant to you and what isn't. And I was quite satisfied with the information that was given verbally by my oncologist and his team, and things that I've wanted to know I was able to access on the computer, on the Internet.

 

Decided that if she wanted to hear only positive answers from her doctors and nurses she needed...

Decided that if she wanted to hear only positive answers from her doctors and nurses she needed...

Age at interview: 63
Sex: Female
Age at diagnosis: 42
SHOW TEXT VERSION
PRINT TRANSCRIPT
I remember asking the doctor at the time, 'Is the chemotherapy going to kill me in ten years?' And he said, 'I don't know.' And so I did learn not to ask negative questions. So you have to learn that, you have to, so you don't, you know, you want them to give you, you ask questions and you really want positive answers and you're asking questions that realistically you know they can't give you a positive answer to, so you have to learn to do that. But again because of my attitude, because of my belief that you can actually take care of yourself, and that because I understand, at least I believe I understand why I had cancer, at least the most likely cause, then it's really up to me to avoid it.

 

With hindsight he regrets not having been more open to seeking information earlier - he thinks it...

With hindsight he regrets not having been more open to seeking information earlier - he thinks it...

Age at interview: 25
Sex: Male
Age at diagnosis: 22
SHOW TEXT VERSION
PRINT TRANSCRIPT
Is there anything you wish you had known when you first found out, or anything that you still don't know about lymphoma?

There probably was at the time when I was first diagnosed because, like I said before, I was very closed to the whole thing and it's only through a very gradual process that I've picked up more information, and in fact since I've finished treatment I know so much more now than I ever did going through chemotherapy and radiotherapy as to the effects it would have on me. Now I actively look at information and will read articles, journals, talk to people and find out their own experiences and find out so much more. And I have a much more healthy attitude towards it, I think, and in retrospect I really wish I had had that attitude from the start basically. Because I think it would have helped me deal with whatever issues I went through throughout treatment and I would have known not to worry about certain things and would have raised certain issues with certain professionals and whatever and could have talked, could explain things better to friends and family and not put them through as much worry and stress and just basically I could just say there's never really enough information that you can take really. You can always take on more and take on different people's perspectives as soon as possible. It's all going to help in the long run. 

Obviously don't bombard yourself with only the negatives, because there are so many positives as well to take. You can't just take statistics, cold statistics, and just say, 'Oh this is what is going to happen to me, I'm one of these 0.03%' or whatever it is, you have to look at the positive aspects and look at people's experiences and what they've taken out from it and don't kind of get bogged down by negative thoughts and all that kind of thing. Just keep a very open frame of mind to it all, and that's how I would have hoped to have taken it but obviously instead shut myself off from everything.

Last reviewed February 2016.

Last updated February 2016.


Donate to healthtalk.org
donate
Previous Page
Next Page