The concept of fear was something that repeatedly arose within the interviews. Many of the participants expressed concern that their cancer could come back at some point in the future; this was often prompted by factors such as: aches and pains, similar symptoms to those experienced at the time of diagnosis, or if they were approaching a follow up appointment. Fear of recurrence was a common concern expressed by participants, with Rachel, and Rob expressing these fears at both interviews. Lucy on the other hand expressed fear of recurrence in the first interview, and by the time of the second interview had developed another tumour. In her case there was a transition from fear of recurrence to fear of progression. For the remaining participants, Geoff, Sarah and Lindsay their experience of fear of recurrence seemed to change over time, only John failed to discuss fear of recurrence at either interview.
Rachel Int 1- “About a year ago, which is where the anxiety came from I think
as well, I found a lump in me breast and it was like, went to the, the, put off a
bit... in the end like I had to go[to the doctor]… went and then they were great,
got me straight in cause they, they, well you think you’re going to go to the
doctors and they’ll say it’s nothing to worry about, the doctor says well there is something to worry about.”
Rachel Int 2 - “Really I should, cause you, you, in me mind and it was there,
thinking well what, what’s causing it, and you think, well you’re worrying about it and your anxious about it and that’s probably why you’re, you know
(Grant –yeah) you’re getting constipated but I should go getting it checked out
really …. (Grant –why do you think you don’t go?) Probably (speaking quiet
and slow) don’t want them to find anything”
The quotes above from Rachel highlight that fear of recurrence may be a stable construct after cancer treatment, expressing them in both interviews. This is highlighted by the fact that in both extracts she mentioned the experience of sensations or symptoms in her body
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which she thought may be a sign of recurrence. In the first interview she discussed finding a lump on her breast, and in the second interview she was concerned that constipation was symptomatic of cancer recurrence. Both of these incidents were accompanied by a subsequent reluctance to go to her doctor, for fear that they might confirm that she had suffered a recurrence of cancer. Her reasoning behind this was explained when she stated in the second interview that she did not report these sensations as she did not want the doctors to find anything wrong. This would suggest that she would rather live with these fears of recurrence, than risk having them confirmed by her doctor. What is interesting from these quotes is that her avoidance in reporting sensations to her GP has persisted over time. Despite discussing in the first interview that when she eventually went to the doctor to have the lump in her breast examined she was told it was not a sign of cancer recurrence, she is still reluctant to have sensations checked 6 months later. This would suggest that not
only is Rachel’s fear of recurrence persistent over time, but also that her method of coping
with fear of recurrence, avoidance, is also persistent over time. Coping strategies are discussed in more detail in Chapter 7.
Rob Int 1 - “I didn’t want to put meself in a position of having 4 cycles (chemo)
and then have it come back and I thought if I have 8, it might not, so I’ll have the 8 and I didn’t do the trial, I was just basically giving meself the best chance
I could”
Rob Int 2 - “(G – Do you think that is coming into your thinking with the
exercise and the weight losing as well, you said you think you have got less chance of cancer coming back if you, if you are fitter?) Yeah less weight, fitter,
healthier, stronger, yeah (Grant –mhmm). I did, go to (life science centre), I
don’t know if I told you about that (Grant –I don’t think you did, no) right well my cousin’s, cousin is a specialist bowel cancer nurse (Grant – you told me about her, yeah, yeah) yeah she suggested that if I went to the (life science
centre), they might be interested to look at the (Grant – mhmm) piece of the
tumour (Grant – mhmm) to see if it was caused by genetics or not (Grant –
okay) and that so we did that and they said not, I’d just been unlucky”
While Rob did not explicitly expresses his fear of recurrence in both interviews, there is evidence in the above quotes to suggest that his fears continued across the two interviews.
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In the first interview, Rob discussed when he was offered the chance to take part in a clinical trial which would have involved receiving half of the normal dose of chemotherapy, with four cycles instead of eight. The above quote highlights that Rob was willing to undergo four extra cycles of chemotherapy that may not have been necessary, as he would have blamed himself if the cancer came back. This suggests that he has an underlying fear that the cancer could come back, which is further highlighted when he said
“have it come back” suggesting that thoughts about recurrence had crossed his mind. In
the second interview, there is evidence that Rob was still experiencing fear of recurrence, although again it is not explicitly articulated. Rob seemed to be associating cancer with physical fitness, and felt less at risk of cancer recurrence now that he was feeling fitter. In the last interview, Rob mentioned that the felt that he was not as fit as he could have been when he was diagnosed, and it seems that he felt partially responsible for developing cancer. This is reinforced when the specialist at the life science centre told him that his cancer was not genetic, and may be why he felt that regaining fitness would minimise his risk.
While many participants will exhibit fear of recurrence, for some those fears will be realised, in the following quotes, Lucy’s fears of recurrence have transitioned to a fear of cancer progressing:
Lucy Int 1 -“You know so it’s probably the lungs that will get us in the end.
Mhmm, it’s how I feel anyway, I don’t think I’m finished with cancer to be
honest with you”
Lucy Int 2 - “I’d started getting these pains and things again, well the pains
have never really gone away, me abdomen and stuff like that… decided to send
us for another scan (Grant – okay), and here, it was showing some lesions and
shadows and stuff, er, me lower kidney, me right kidney area, stomach, in between the stomach and the pancreas was a little sort of tumour. .. They could put me on a tablet called Tamoxifen which, has been sort of shown in 30% of
the cases to reduce, or hold whatever’s going on… The thought of chemo, is just something I really do not wish to have to do again”
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In her first interview Lucy had a strong belief that she would suffer a recurrence of cancer, which was highlighted by her use of the phrase “I don’t think I’m finished with cancer”. The fact that Lucy has had cancer on two previous occasions may be contributing to these fears. Furthermore, she seemed to have a strong sense that if her cancer does return then it would be lung cancer. The fact that Lucy continued smoking since being diagnosed with cancer could be the reason why she felt she would suffer from lung cancer, and may also be adding to her fears of recurrence. The quote from Lucy in the second interview highlighted the transition of Lucy’s fears from fear of recurrence to fear of cancer progression since the discovery of a new tumour. Lucy was concerned about the prospect of the tumour progressing and medication not slowing the growth of the tumour. This is evidenced when she stated her fear regarding having to undergo another course of chemotherapy. This would suggest that her previous experience of cancer treatment was shaping these fears.
However, experience of fear of recurrence was not stable for all of the participants in this study. The following quotes suggest that certain triggers can cause fear of recurrence to emerge at any point along the cancer journey:
Geoff Int 1 –“ I don’t sort of really think (because) I’ve had (it) that it can
come back at any time so I best not make long term plans. So working on that
basis, I don’t let it affect us, really”
Geoff Int 2- “I had some symptoms, it lasted about three months which did
cause concern and obviously when erm whe... when you’ve had something like
I’ve had, whe... when there’s something not right you immediately think ‘oh it’s back’ and it, it, it’s difficult not to think that way… I actually got in touch with CNS and I … says erm look you know I’m getting nagged off the wife sort of
thing to get in touch with you, got these symptoms, what you thinking?”
The above quotes highlight the change in experience of fear of recurrence for Geoff. In the first interview he seemed unconcerned about the possibility of his cancer returning, this is emphasized when he expressed that he does not think just because he has had cancer that
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it can come back. Furthermore when he said “I don’t think - I’ve had it, I best not make
long term plans” this would suggest that he felt able to get on with his life and did not let
the fact that he has had cancer affect him in this regard. However, by the time of his second interview the occurrence of potential cancer symptoms have led to fear of recurrence developing for Geoff. This is evidenced by the phrase ‘you immediately think
oh its back’ with Geoff expressing that it was difficult not to imagine that it had returned. What is interesting is that despite Geoff’s fear of recurrence he did not report his symptoms
straight away to his CNS, and only did so because his wife asked him to do it. His avoidance of reporting symptoms to his CNS may be his way of coping with his fear of recurrence, as if he does not report his concerns then he cannot be told he has recurrent cancer. The use of avoidance coping techniques is something which was discussed in the literature review (Chapter 2.6) as being maladaptive, and could reinforce fears of recurrence.
Like Geoff, Sarah did not consistently express explicit fears of recurrence, with Sarah this was only discussed in the second interview:
Sarah Int 2 - “I’m not nervous about the having it done (colonoscopy), and I’ll
probably have to go on me own for the results… if they take a biopsy then they
will have to take it away, just better not, better not find anything. I just keep
thinking, well I had no symptoms the first time, so you know, wait and see”
The above quote from Sarah suggests that fear of recurrence can be triggered by certain events, as Sarah did not discuss fear of recurrence, or a lack of, in the first interview. In
Geoff’s case the experience of symptoms triggered his fear of recurrence. However for
Sarah, the activation of fear stems from her approaching hospital follow up appointments. If her thoughts about recurrence are linked to approaching clinical appointments, then perhaps she did not have an imminent appointment at her first interview. If this was the case then it would suggest that experience of fear of recurrence may fluctuate over time,
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with certain events activating or re-enforcing these fears. Another salient perspective, given that Sarah was diagnosed at a screening with no prior symptoms, is that her prior experience reinforces her vulnerability and belief that any future hospital appointment is another risk that clinical staff may diagnose cancer again.
While Paul discussed fear of recurrence in the first interview, he declined to take part in the second interview, making a comparison over time not possible in his case.
Paul Int 1 - “Well I’m gona be okay, as long as I keep meself right and I’ve
done it ever since, I’ve been right. If I just keep meself fit, I mean I put a bit of weight on now since I finished in eh September but eh I’m going to start up me
walking again and me swimming like I used to”
While Paul does not explicitly express fear of recurrence in his interview, the language he used suggests there is still an element of those fears present. This is evidenced by Paul
talking about “being okay as long as I keep meslef right”, like the quote from Rob outlined
previously. This would suggest that Paul felt his cancer was linked to physical fitness and suggests that he felt more at risk of cancer recurring if he does not keep himself fit.
Over the course of the two interviews the majority of participants have expressed some level of fears of recurrence. The above extracts support the idea that the experience of fear of recurrence can persist over time (as discussed in the literature review, Chapter 2) in that most people who expressed their fears in the first interview also had those fears at the second interview. However, the level to which they explicitly express these concerns does seem to be affected by certain triggers such as experience of symptoms, or upcoming follow-up hospital appointments. The uncertainty caused by these triggers can escalate fears of recurrence, which is then only alleviated if the symptoms go away, or when the results of the follow up check show that the cancer has not returned. However, one of the consequences of fear of recurrence appears to be a reluctance to report any symptoms which are experienced, for fear that their suspicions of cancer returning will be confirmed.
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This is obviously counter-productive as if the cancer has not returned then they are worrying for no reason, and if it has returned then the earlier it is caught the better. The use of negative coping strategies, such as avoidance, discussed in more detail in Chapter 7, have been identified as leading to adverse outcomes of cancer such as depression and anxiety (Llewellyn, Weinman, McGurk, and Humphris, 2008). If the cancer does recur, then the fears associated with recurrence can then be displaced by fears that the cancer may have progressed to the stage that aggressive treatment is required, and memories of previous treatment can contribute to these fears. Different patients seem to adopt different coping strategies to deal with fears of recurrence, Geoff and Rachel appear to adopt a negative coping strategy of avoidance by not reporting their concerns, whereas Rob seems to adopt a positive approach accepting that there is a risk that his cancer could come back and opting not to try an experimental lower dose of chemotherapy. This may have implications for future disorientation as Roberts and Clarke, C. L., (2009) demonstrated that a failure to adapt to a new future following cancer diagnosis can lead to future disorientation. Therefore, the use of positive coping strategies in the face of fear of recurrence may help to prevent or lessen the impact of future disorientation.
Studies have shown that the prevalence of fear of recurrence in colorectal cancer patients can vary from 5-69% (Frykholm et al, 1995), and between 20% and 50% of women with gynaecological cancer (Myers et al, 2013). Therefore it is not surprising that a number of participants in this study have expressed fears of recurrence, with both gynaecological cancer patients, Lucy and Rachel discussing these fears at both interviews. Similarly, of the patients with colorectal cancer: Lindsay, Paul, Rob, Sarah, and Geoff all expressed fear of recurrence in at least one of the interviews, with Lindsay discussing them in both. Studies have shown that fear of recurrence tends to be stable over time in patients with head and neck cancer (Ghazzali et al, 2012) however, the results from this study would
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suggest that the experience of fear may change over time. This could suggest that those patients whose fears persisted over time were suffering from higher levels of fear of recurrence, or distress associated with these fears, than those who only expressed these fears at one interview. Furthermore, referring back to the literature review in Chapter 2, fear of recurrence can have negative consequences such as anxiety, poorer quality of life, and patients can feel less informed about their illness (Handschel et al, 2012; Hong et al, 2010).