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Lymphoma

Watch and wait

People who have indolent or low grade (slow-growing) non-Hodgkin lymphoma may not need immediate treatment. Those who are well, have no symptoms such as weight loss, night sweats or fevers, whose lymph nodes are not obviously enlarging rapidly or threatening major organ function, will be regularly monitored by their specialist for months or years until the illness changes and treatment is considered necessary. This is known as 'active surveillance', 'watchful waiting' or 'watch and wait'. Research has shown that people who are monitored in this way do just as well as those who are immediately given chemotherapy, plus they are spared the unwanted effects of treatment. Some may even avoid treatment altogether.

Some people in this situation feel relief that they will not have to undergo immediate chemotherapy. However, it can be unsettling to be told you have cancer but that you don't need treatment. One man we spoke to said he was 'amazed'. As well as trying to understand this situation for themselves, the person has to explain it to friends and family who may find it even harder to believe.

 

Was dismayed to be told she had cancer but did not need treatment, which her friends found hard...

Was dismayed to be told she had cancer but did not need treatment, which her friends found hard...

Age at interview: 64
Sex: Female
Age at diagnosis: 53
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Anyway I saw the cancer specialist who said in effect, 'You've got cancer and you don't need any treatment.' This is meant to be reassuring. Of course you go away thinking either that your oncologist doesn't care or doesn't know what to do, you know, of course cancer needs treatment for God's sake. And what they're side-stepping telling you is that low grade lymphoma is not curable but that it grows very slowly and your life more or less goes on pretty much the same. 

It's, you know, in addition to the fact that you're told you don't need treatment, which you don't believe, you're faced with having to tell your friends that you don't need treatment, which they don't believe. So with hindsight I realised they must have thought was I making the whole thing up. I mean you laugh but it's a serious thing, it's, you know, they expect you to believe the unbelievable and to tell your friends the unbelievable. 

So you started off with no treatment at all. How did you feel during that period, I think it was two years or so? I mean how did you feel about not having any treatment?

Well I felt pretty bad about not having any treatment, I thought, 'Why the hell not?' And in fact apart from them telling you ever so cheerily you don't need treatment, to which you privately think 'This is what drives people going off to wacky alternative therapists and charlatans', what looks like and may well be flagrant callousness, and it's really because they don't have the guts to tell you that in the long term they can't cure you but they can give you, for instance, chemotherapy to debulk tumours and make life comfortable. And they don't tell you it's not curable, and they don't, the fact is that at first, I mean I had two little, one tumour here, a couple of little tumours each side of my neck, there was no point in treating that but the treatment, you know, the tumours grew so slowly that it was, you know, you didn't notice it from one month's end to another. There's no point in socking a harmless little lump the size of a pea with horrible great chemotherapy. You save the chemotherapy till you start to want to get rid of lumps.

 

Had been geared up to have treatment so was shocked to be told he would be put on watch and wait...

Had been geared up to have treatment so was shocked to be told he would be put on watch and wait...

Age at interview: 44
Sex: Male
Age at diagnosis: 33
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I think the worst part is, the worst part that I remember really well was the watching and waiting policy because they'd gone from gearing me up to having treatment, which I accepted, and they went through everything that they was going to do, and then all of a sudden they stopped and said, 'No actually we're going to watch and wait you now because we feel that we don't want to rush in with chemotherapy because it might,' how they put it was, 'If we rush into giving you chemotherapy now, when you're quite well, it might limit the amount that you can have later on when it does come back or when it grows more aggressive.' So that's how they portrayed it' 'That we feel it's in your interest just to watch and wait and we'll just keep an eye on you'. 

So I sort of come away, my wife and I come away from that interview and I just remember just being in shock really because they, I was geared up to having some form of treatment and then to come away and like they was going to leave me, you know, just didn't seem right. So that was '97 and so it was just a question then of going backwards and forward to my local hospital, having scans and bone marrow biopsies and just basically going back to see my consultant every few months. 

This went on till 2001 where the lumps that I had in my groin, I had some under my neck, they were sort of getting quite big and a bit uncomfortable, and it was that stage when they decided that they were going to start treatment. 

Being on 'watch and wait' means seeing a specialist every few months for various tests to check on the illness and possible symptoms. These appointments can be an unwelcome reminder of the diagnosis - some mentioned that sitting in the waiting room was hard - but between appointments life can be normal. Some people occasionally had concerns about whether they needed treatment, or worried that their doctors might be mistaken. Reassurance from the consultant helped. A woman in her early 60s wondered if maybe 'observing rather than treating cancer' was more common in older people than we realise. One man who was anxious to do something to help his illness decided to try a Chinese herbal medicine, but he stopped before his chemotherapy began (see 'Complementary approaches').

 

Explains how often he saw his specialist during 'watch and wait' and what happened at those...

Explains how often he saw his specialist during 'watch and wait' and what happened at those...

Age at interview: 58
Sex: Male
Age at diagnosis: 51
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So at the very beginning when you were on 'watch and wait' how often did you see your consultant in that time?

It varied between six and twelve weeks over a couple of years, the same routine each time would be a bone marrow, sorry a blood test, which then enabled them to check my bone marrow from what they were seeing in the bloods I guess, and just a physical examination, a chat, how did I feel, how was I coping? I was introduced to Macmillan nurses several times during these interviews, which I thought was actually very good because when I later went for the treatment the same nurses who I'd met were involved with that as well. At one point I was also taken up to the chemotherapy room so I could just see where I was maybe going to have to end up, got to know the procedures. And, but they, again they became a matter of routine. 

And the hardest part was sitting in the waiting room, just waiting to go in. And I'm fortunate I've had a very good haematologist who was very understanding, very approachable, and obviously over seven / eight years of meeting him regularly he's become quite a friend in many respects, and the doctor-patient relationship is kind of blurred a little bit because he knows of my interest and I also have done some charity work and things like that, so he tends to keep me informed about things that he may have heard and frequently will ask me if I've heard anything new that I can tell him.

 

Needed regular reassurance that he didn't need treatment and could forget about his illness by...

Needed regular reassurance that he didn't need treatment and could forget about his illness by...

Age at interview: 58
Sex: Male
Age at diagnosis: 51
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So what I'm trying to get at is can you tell me a bit more about your mental state during the watchful waiting period, you know. You hinted that you weren't entirely happy with having nothing done, you know, is it a big problem?

No it's a very strange, it's also hard to put myself back there, bearing in mind that was 98/99 and part of 2000, it's quite a few years ago. 

Part of me was, I suppose, slightly relieved that they weren't actually going to do this chemotherapy that I'd heard about. Each time I would go and I suppose each time the haematologist would say, 'No we don't need to give any more treatment,' somewhere in the back of my head was thinking, 'Well this can carry on for years, you know, ten years, twelve years and then well, perhaps that's it, perhaps that's all that's going to be'. So it was slightly worrying but as long as they kept reassuring me that I was OK. And my own feeling in my body was I was OK and I could work and travel, I could do everything which I'd done prior to diagnosis, I could live with that. 

The problems came going back to the hospital every eight, ten weeks, whatever it might have been, because then you remember. You just get to the point where you're busy with other things, life is happening, and you can sort of put it to the back of your head. When you have to go to the hospital and sit in the waiting room and it's in the front of your head again and you have to consider all of the options that are available to you. But some people I understand really struggle with the watchful waiting because they want to get on and do something. And I was fortunate' I'm busy, I was working, and that filled the gap, I suppose that filled the worry hole that could be there. And then when we came to the point of actually doing the chemotherapy then I could actually focus on that, I could focus on, 'Right, now we start to work'.

 

Was concerned during watch and wait that his lumps were growing bigger and with hindsight feels...

Was concerned during watch and wait that his lumps were growing bigger and with hindsight feels...

Age at interview: 44
Sex: Male
Age at diagnosis: 33
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And that's when, between '97 and 2001 when I started treatment, in that period was very difficult, it was difficult with my family, sometimes I couldn't cope, you know, it was quite stressful because I knew that the lumps were getting bigger, I knew that even though I wasn't getting, it wasn't painful or I didn't have any symptoms of being sick or like the night sweats that sometimes you get associated with this, I wasn't getting any of that, it was just the lumps that were getting bigger in my groin, and I had some under my chin and under my arms and the ones in my neck, and I just remember saying to my wife, 'I think they're making a mistake, are they, I'm sure they should be treating me now because it's getting to the stage where they're getting quite big'. But every time we went back they said, 'No we're not rushing into, you're fine we're not rushing into treatment'. So that was quite a hard time between the few years that I had to wait, that was quite a hard time.

Looking back on it now with all the experience that came afterwards, do you still think that was the right decision?

There's sometimes where I still stick by my feelings that they left me too long because this was, this became apparent, I feel, when they, when I started treatment in 2001 and they put me on the CMD drug for three months, they also, they just, and then all of a sudden it came from another haematologist, consultant, who said, 'No actually we feel he's gone further down the line than you said he had,' so I felt there was this conflict in opinions between the two teams. And then all of a sudden like I was rushed off to meet another team of consultants who then put me on a more aggressive treatment, so I felt' did the first lot of consultants maybe get it wrong and leave me too long when they could have treated me earlier?

 

Sometimes worries about her illness but reassures herself that it is being dealt with; having...

Sometimes worries about her illness but reassures herself that it is being dealt with; having...

Age at interview: 61
Sex: Female
Age at diagnosis: 60
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But it does seem very odd, on reflection, you wake up in the middle of the night and think, 'I've got cancer and nobody is doing anything about it'. And then you have to think, 'No that's not so'. I see the consultant every six to eight weeks, they take bloods, they check my weight and they ask me very obvious questions, and he feels my lymph glands. He left one of the small ones in my neck to act as a kind of weather gauge for something happening. And fourteen / fifteen months further on I'm just as fit as I was on that first day that I turned up. 

But I've had a bit of adjusting to do in my own mind and I can understand that for some people this would be a very difficult one. Curiously because I'm widowed I actually think it's easier for me, I don't have anybody else to worry about. I only have myself to think about and I think I've adjusted fairly well to thinking, 'Well this is the situation'. But I've had fifteen months of excellent quality of life, I would say that my quality of life has really not deteriorated in any way, now I've got a bit of confidence back. Looking back, my first reaction was to kind of freeze, to stop doing things, or to think that I was going to stop doing things that I was involved in before, and certainly not to take on anything new. But that didn't last very long and after three or four months I thought, 'This is no way to live'. I was recently retired and I was at the point where I'd thought I was going to be putting different things in place that I would enjoy doing and I've just gone ahead and done that, I've undertaken new interests and new activities and so that stopped getting in the way. 

Last reviewed February 2016.
Last updated February 2016.
 


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