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Lymphoma

Treatment decisions

As a result of much research the treatments for many types of newly diagnosed lymphoma are now standard and few choices are needed. Decisions between various courses of action are more often needed when treating lymphoma that has not responded to first-line treatment or has relapsed.

 

Felt relieved to learn that the best treatments for most lymphomas are now known, so there was no...

Felt relieved to learn that the best treatments for most lymphomas are now known, so there was no...

Age at interview: 45
Sex: Male
Age at diagnosis: 45
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I was quite encouraged in a way by the way in which the treatments for every different sort of lymphoma are pretty much worked out, so that if you've got A you get treatment B, and if you've got B you get treatment D. And there wasn't any sort of debate or argument about which treatment you get. Effectively there are a number of different chemotherapy regimens which have been used over the years. ABVD is chosen now partly because it's easier to tolerate than some of the older ones that made you very, very sick and you had to be in hospital, and partly because there aren't the same long term risks of secondary cancer developing as there are with some of the drugs used in the older regimes, which initially you don't tend to worry about because you just want anything that's going to actually save your bacon in the short term.

It was pretty cut and dried, the treatment of choice for Hodgkin's Lymphoma, which is not confined to one lymph node with no B symptoms et cetera, is ABVD, and the reason for that is that it's as effective as a number of other treatments but has less long term risk. Radiotherapy has significant long term risks, an awful lot of people run into trouble in later life who've had mantle radiotherapy, which is covering the top half of you and involves irradiating the muscle of your heart. So I was encouraged by the strength of opinion of the haematology community as a whole, in terms of what was the best treatment for Hodgkin's. I think if there had been two or three different competing treatments then we would've got into a very detailed discussion about which was right for me. And that sort of discussion would've been made much easier for me as a GP because the consultant could've used much more technical language and we could've covered all the ground much more quickly and effectively than him having to actually explain in detail each and every point and explain what the long term side effects were and what the sort of chances were and that sort of thing. 

So as far as I was concerned the fact that my consultant was so clear that ABVD was the correct treatment was enough for me. The fact we didn't need to discuss three or four different competing options was I think a relief for me at the time because if I'd had to get involved in that then I'd have had to start doing my own research, it would've slowed things up for a short time but would've created a lot more mental angst for me in terms of, 'Am I making the right choice here?' 'What if this happened, what if that happened?' So in a sense I was actually very pleased that ABVD was the outright winner, as it were, in the contest for the treatments for this particular condition and I could just get on with finding out what that meant and actually sort of getting to grips with coping with it.
 

Many people said they had been offered no treatment choices or had felt there had been no choices to make. People commonly said that, in any case, they trusted their doctors' expertise and went along with their recommendations, questioning nothing. First impressions could be important - one man had been so impressed on first meeting his specialist that he would have done anything he suggested. Many said they would do whatever their specialist told them if they thought it might cure their illness or relieve their pain; some followed the professional advice 'to the letter'.

 

Had total confidence in her oncologist's decisions about her treatment.

Had total confidence in her oncologist's decisions about her treatment.

Age at interview: 59
Sex: Female
Age at diagnosis: 55
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What about treatment decisions, did you ever feel you were involved in the decisions about what should happen or'?

Very much so, it was very cut and dried. It wasn't sort of, 'We'll offer you this, we'll offer you that'. It was radiotherapy to deal with the tumour in my eye. The lymphatic gland that was removed was basically very localised, I didn't need chemotherapy and if I did need it it would have been given in tablet form rather than intravenously, which was a huge relief. But in the end my oncologist decided no, the benefits really wouldn't be relevant. And it's coming on for three years nearly and I'm very, very well. And I have total confidence. I think you have to have confidence in the people who are looking after you. If you don't have confidence in them then I think there's nothing wrong with you going to say to your GP and say, 'Look I'm not happy with what I'm getting, could you refer me somewhere else?' There's no shame in that, there's no embarrassment. 

I personally think I've been very well treated and I can only have praise for the people and the NHS. 

 

Precisely followed the instructions he was given about how and when to use his medication and...

Precisely followed the instructions he was given about how and when to use his medication and...

Age at interview: 53
Sex: Male
Age at diagnosis: 42
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Do you feel you were involved at all in the decisions over your treatment or was it always the case that the doctor was just saying, this is what we're going to give you, that's it?

Really you're in their hands because they know what they're doing and you may think you know what they're doing but you don't. As far as blood transfusions were concerned I suppose I could've said, 'No I don't want the blood transfusion', but apart from that really you just have the treatment. I did exactly what they wanted me to, even down to the things, they give you one or two things I've forgotten to mention, one thing is that the chemotherapy causes the mouth, you can get mouth sores and ulcers inside your mouth, so they give you a mouthwash which you have to use all the time, every day. You dilute it down and you swill it around your mouth. And that, I used that exactly the way they said. I did everything exactly the way they asked it to be done. The tablets were taken precision timing, to exactly the time of day, because to have the maximum effect it's no good leaving them for two or three hours, 'Oh I'll take them later today.' Everything was done at exactly the same time, the mouthwash was done every day and that prevented the mouth ulcers which a lot of people get from this treatment, you can get nasty mouth ulcers. If you do the mouthwash at the right time exactly as they say then it should be OK. 

The hair, when the hair drops out, you have to still wash, sort of wash what's left of it, of your hair, and they told me you have to use a very, very mild shampoo, a baby shampoo. So I went out and bought the baby shampoo and used that instead, not wash the hair too much, about twice, not more than about twice a week, because the scalp can be affected by the treatment as well. So that's what I did, used the baby shampoo throughout the period, little things like that. Everything was done exactly to order, I had a sheet with what to do and I did it. There's no point in thinking, 'Oh I won't do this, I won't do that, it'll probably be alright', because if they're saying you need to do it, you do it, and it's for a certain amount of time, and at the end of it all you hopefully come out alright.

Several had felt no involvement in decisions, which a team of doctors seemed to have made 'behind closed doors'. Some people said they would have preferred more involvement, even if only in the practical details, such as when to schedule the treatment.

 

Thinks that patients should have a bit more say in planning their treatment schedules.

Thinks that patients should have a bit more say in planning their treatment schedules.

Age at interview: 27
Sex: Female
Age at diagnosis: 25
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How did you feel about treatment decisions? Did you feel that you were involved in those at all or was it just a case of them telling you 'this is what you're going to have'?

No. I didn't feel involved in the slightest. I think that was one of the big things. I felt like you weren't in control of anything. My consultant had decided exactly what treatment I was going to have, when I was going to have it. And he wouldn't discuss it with me, which I wasn't very happy about. I had reasons that I didn't particularly want the treatment on the day of the week that he specified. And I told him that I wasn't very happy with things as they were. And we eventually came to a compromise, which I think was great because it made me feel as if I was having a little bit of input into my life. And then things were a lot better for me. I felt like I could have time to spend with my family because I'd have the weekends when I was feeling a little bit healthier. Yeah I think you have to have a certain level of trust in your consultant and your medical team because they deal with this every day. But I do think that the patients ought to have a little bit of say in things or a little bit of flexibility possibly involved because otherwise you're just losing all of your independence and all of your control.

So they wanted you to have your treatment on Fridays?

On a Friday.

That would have wiped out your weekend?

Yeah. I think you have to give yourself something to look forward to, and by having a treatment on a Friday that would wipe out your entire weekend, the time when your partner and your family are around and you can spend time with them. And having had, if you'd had treatment on a Friday you wouldn't have been able to do that and have the quality time that you wanted with them. Yeah we made the compromise and had my treatment on a Wednesday. So by the weekend just starting to feel a bit more human and you could actually do things, which was great. Otherwise you'd just feel like you weren't seeing anybody or doing anything all week really I think.

Some people had felt involved in treatment decisions because their specialist had explained the various options. However, they often felt unqualified to make choices and would defer to their specialist's expert knowledge and follow the recommended treatment plan. One woman said, 'decisions were not made without me, I think I could have at any time queried a decision, changed a decision, and I did feel totally involved in the process'. Another said, 'I felt completely as if this was a treatment partnership. I was never bullied or bludgeoned.' A man said he felt 'the decision was always his', and another 'was happy with the way decisions were taken'.

 

When his lymphoma relapsed several alternative treatments were discussed and he accepted his...

When his lymphoma relapsed several alternative treatments were discussed and he accepted his...

Age at interview: 58
Sex: Male
Age at diagnosis: 49
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How were your treatment decisions made, did you ever feel that you were party to the decisions or was it a question of your consultants just saying this is what you've got to have, end of story?

I never felt that I was somebody being told this is what I had to have. Clearly I've grown over the years to put a lot of trust and faith in senior medical staff, but they do sit and talk you through it, and as I said to you earlier, that on all those occasions my wife joined me for those discussions, so that she feels she is inevitably part of that discussion. They've taken me through not just for that but what the alternatives are. And one of the alternatives this time was we do nothing, but they don't recommend that, and clearly that's not something I'd buy into, but at least he went through three or four different alternatives as choices I had in terms of treatment. So I wasn't left to say this is the way it will be. Clearly there was a recommended course of action and that's the one that I have followed. But it has come through discussion to be honest.

Good.

But we have to recognise that I'm not a doctor therefore my understanding is more limited and I've grown to trust them, not dictated to. I think that's part of it.

Some people had raised concerns about aspects of their treatment plans with their specialist, had disagreements or refused certain procedures. One man asked his specialist about possible damage to his heart from treatment that might stop his flying career, and his desire to have more children. These issues were then considered when treatment decisions were made with his specialist. A young woman who had radiotherapy to her groin said she didn't want to be made infertile so her doctors did an operation to move her ovaries out of the treatment field. Another refused to have her pleural effusions drained on admission to hospital as an emergency because she felt so exhausted, and had it done later. 

No one we talked to said that they had refused treatment that might cure them. One woman was told she needed chemotherapy but was asked whether she wanted it and when she wanted it to start, to which she answered, 'Well yesterday, you know, just do it'. Another woman had expected to be given the choice of refusing treatment, but later was glad that she hadn't been.

 

Was glad she hadn't refused chemotherapy as it had so far been easier to tolerate than she had...

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Was glad she hadn't refused chemotherapy as it had so far been easier to tolerate than she had...

Age at interview: 47
Sex: Female
Age at diagnosis: 47
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They've discussed it, they've described it, but I haven't been involved in any decision over what to do. 

How do you feel about that?

I don't feel bad about it. I feel they know, they are the specialists. The one decision I suppose I would have maybe been expected to be asked was, 'Do you want to have treatment or not?' And that wasn't asked. And maybe it was just as well it wasn't asked because in my own mind I'd always decided, having seen other people go through cancer treatment and then still with the same outcome in the end, I've often thought, well maybe I wouldn't do that. Maybe I'd just deal with the cancer and not worry about all the effects of the chemotherapy. But, given that the chemotherapy hasn't been as bad as it could have been, so far, this is not with the bone marrow in the offing, maybe it's just as well that I wasn't given that choice. But no, otherwise there's been no decision for me to make in this.
 

A few people had been explicitly invited to make choices, including those whose disease didn't need immediate treatment but could be monitored (see 'Watch and wait') and those whose disease had relapsed. However, being offered a choice of high dose chemotherapy with stem cell support or not was often seen as 'no choice' since the chances of survival were much greater with this treatment than without it. 

 

Her low grade lymphoma did not need treating yet but would be monitored; she could however have...

Her low grade lymphoma did not need treating yet but would be monitored; she could however have...

Age at interview: 61
Sex: Female
Age at diagnosis: 60
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I could not speak highly enough about the professionalism and the courtesy that was demonstrated to me. 

So at the first appointment, the first time around he spoke to me about radiotherapy because he did not have the full report from the radiologist at that point. At the second appointment he said it would be chemotherapy because it was at a more advanced stage than he had expected. But he wanted to take my case to the interdisciplinary team, that I think is commonplace in hospital settings. So the third appointment he said that he had discussed my case and his colleagues to a person thought that he should just watch the situation rather than do anything immediately, because I am, to all intents and purposes, I am perfectly well and I was perfectly well. I go to the gym regularly, I do not suffer minor ailments, I think of myself as a fit person, I just was a fit person who had a lump which I'd had for a long, long time, he tells me maybe as long as twenty years. Had I not had that lump I would not have known there was anything wrong with me at all. 

So he said at that stage, 'That's my colleagues', that was the general decision that that's the way we should take it and I will go with that if that's what you want, but if you want chemotherapy now I will give you chemotherapy.' It was fortunate that at that point I had the daughter with me who is a geneticist by training and when we came out she said, 'It's a no brainer mum, that was the considered decision of a range of people, a range of skills, and that's what you should go with.' 

People with relapsed disease who had already had several different conventional treatments were sometimes offered the choice of trying treatments that were new or experimental at that time. These included intravenous fludarabine, a mini transplant (see 'High dose therapy and stem cell transplantation'), rituximab or 90y-ibritumomab tiuxetan (Zevalin) (see 'Immunotherapy'). One man, who suspected that doctors are rather set in their ways and do not like patients to have ideas about their treatment, persuaded his doctors to give him Zevalin after having found out about it himself. The same man has since been offered the choice of having an experimental type of transplant that uses stem cells from the umbilical cord of a newborn baby.

 

Has been offered an experimental cord blood transplant, which might gain him a long remission,...

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Has been offered an experimental cord blood transplant, which might gain him a long remission,...

Age at interview: 44
Sex: Male
Age at diagnosis: 33
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My next procedure is going to be a cord blood transplant.

A cord'?

Cord blood transplant, yes, which is'

What does that mean?

This is the latest thing that's come from America, and it's basically, what they're finding is that they treated a lot of children that have got leukaemias and cancers, using this method, and basically they take the blood out of a newborn baby's umbilical cord and they find in that is rich with stem cells, which is good for fighting off the cancers. So they use that as a transplant now instead of bone marrow. And they tried it on adults and they found that the results were quite good as well. They said to me that a bone marrow transplant wasn't an option with me because I'd had quite a lot of treatment they didn't feel that my body would be up to having an unrelated donor. I've got a brother that they tested but unfortunately he wasn't a full match, so once they go with a brother or sister, if they're not a match then the next step is an unrelated donor. And at that time I wasn't in a, you know, they felt I wasn't in a position for me to survive a bone marrow transplant using an unrelated donor, so that wasn't really an option. And that was a year ago. 

But now because I've, you know, a combination of the rituximab and the Zevalin has seemed to work quite well, I'm quite healthy at the moment and they feel I'm in a good position to have this cord blood transplant. So I've just recently been to see my consultant and I'm going back in a couple of weeks to get a date that I'm going into hospital to have this transplant, which I believe is probably Easter.

So it has got risks obviously, my consultant was saying that it's fairly new and he gave me all the procedures and he had to give me all the information that could go wrong. And I'm going to be quite ill for quite a while when I come out of hospital, probably going to be in there for about six weeks in isolation and I can just, you know, I'm probably going to catch all the infections, and all the procedures that go along with having a transplant, like my body could reject it, and so I've got a long, I think after this it's going to be quite a long journey this year with me being ill again after being quite well at the moment. So I haven't made up my mind yet, I've got, I'm going back to see him in a couple of weeks and hopefully by then he'll have checked just to make sure that the cord is a perfect match for me, which it is at the moment.

So they still have to match it?

Yes it's still got to be a match, but it's not as critical as a bone marrow, they find that because in one cord it's quite rich with stem cells, and the only thing with using a baby's blood cord, you know, blood from a cord from the baby, is that when you put it into an adult it's going to be very slow growing, so my white count is going to take quite a while for it to come up to like a safe level for protection against infections, and so that's why I've got to be really careful. And he said to me that I'm probably going to have readmissions into hospital, I'm probably going to get infec, I'm going to need blood transfusions and platelet transfusions, and so I've got a long journey after March, April time for the rest of the year.

And how great are the risks, did he tell you?

I've probably got one-in-four chance of surviving.

Is that all?

Yes.

Oh my God!

Yes. So I’ve had to take that on board and, you know, because I’ve had quite a lot of treatment in the past, he’s not saying it’s a cure but he’s saying it could keep it away for quite a number of years. And I just feel that I would say to anyone that you’ve got to have confidence in your consultant, if they feel that there’s a treatment that could possibly work I think you’ve got to go with that, and I’m being positive, you’ve got to be positive all the way through, and yes it’s a risk, one-in-four chance of surviving it is a risk but, you know, I’ve got to, I feel now that I’ve got to go ahead with it and I feel that that’s where I want to go.

Other people were given the choice of taking part in clinical trials designed to test new treatment regimens against standard treatment. In most trials, to avoid bias a computer randomly allocates volunteers to the different treatments being compared. This means that volunteers cannot choose which treatment they will have, and some will not know which treatment they are having. One man took part in a trial to examine whether taking vitamin D affects the length of remission and doesn't know whether he took the vitamin or a placebo. He later had two low doses of radiotherapy as part of a trial comparing this with standard intensive high dose radiotherapy. His tumour had shrunk after treatment so he and his specialist believe the new regimen, which brings the benefit of fewer hospital visits, must be working. Another man was in a trial investigating the ability of a drug called epoetin alfa (Eprex) to boost red blood cells; this drug is now used routinely. A woman took part in a trial investigating whether MRI scans can predict patients' response to chemotherapy. Some people who were not told the results of their trial would have liked to know.

 

His first chemotherapy was given as part of a randomised clinical trial comparing a standard...

His first chemotherapy was given as part of a randomised clinical trial comparing a standard...

Age at interview: 58
Sex: Male
Age at diagnosis: 51
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The very first treatment I had, the CMD, was part of a clinical trial, which the specialist had explained to me didn't mean I was getting any better treatment, didn't mean I was getting anything different, but just meant that my results would be logged and I would be slightly more closely monitored than I would be if I was just having conventional chemo. The trial was between CMD and FMD and I drew at random the CMD, which was the more conventional treatment, had been around a lot longer. And I think what the trial was about was to try and compare FMD to CMD, which gave the best results. And that was explained to me in quite some detail why they were doing it and did I want to take part in it? And so I did. 

How did you feel about your treatment being chosen at random that time?

Fairly OK, I mean it was, I suppose my wife was hoping for the FMD because we'd heard that that was kind of better than the other one. But no I'm kind of a pragmatic sort of chap I think, I just, if that's what it is, that's what it is, you know, that's what I agreed to do and so there's no point in saying, 'No I don't want to do it now'. So I knew it was going to be one or the other.

Did you ever find out the results of that trial?

No I didn't.

Some people knew that they had not been invited to take part in clinical trials either because some aspect of their case made them ineligible for a particular trial or because there weren't any relevant trials being done at the time. Although she wasn't in a clinical trial, one woman said that the results of her treatment were being monitored for research purposes because she was unusually young to have a type of non-Hodgkin lymphoma called Mantle Cell.

 

His doctors considered him for a trial involving PET scans to assess the effect of chemotherapy,...

His doctors considered him for a trial involving PET scans to assess the effect of chemotherapy,...

Age at interview: 37
Sex: Male
Age at diagnosis: 36
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Did they ever invite you to take part in any clinical trials at all?

There was talk at the beginning, when it was first diagnosed there was talk of there was a PET scan study, there was a trial on that where I would've had the PET scan done I think earlier and a lower amount of chemo, I think it would've been four cycles of ABVD again with the PET scan. But there were limits on it and I was just over the limit in terms of the bulk of the disease, I'd slightly too much of it, some of the larger lumps were just too big to put me into the trial so I was discounted for the trial.

Last reviewed February 2016.

Last updated February 2016.


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