When people are treated for cancer, it is common for them to fear it could come back – either in the same place or another part of the body. In the last decade, medical researchers have increasingly come to recognise the breadth of these fears and how it can affect someone.
The patients who are most afraid of cancer recurrence say they have a poorer quality of life, are more likely to develop depression and use more health services. They tend to have thoughts about their cancer returning with very little triggering – a twinge or sensation from some area of the body can be all it takes to convince them they have a new tumour.
Estimates vary about how fearful patients are about cancer recurrence, but it appears a serious concern. I was involved in research that reckoned that about half of cancer survivors are between moderately and very worried about recurrence, and slightly fewer than one in ten are very worried – albeit these were averages of quite varied findings. We also know, for example, that over 60% of breast cancer patients say they wish to speak to their specialist doctor about their worries.
My research group have since published a new report that confirms another part of the puzzle: patients who have received chemotherapy tend to fear cancer recurrence more than those who only have surgery. The effect is small but unarguable – we have combined the results of 40 studies over a number of years using a tried and tested statistical approach known as meta-analysis. It builds on our recent findings that found the same thing to be true with radiotherapy.
Fears and uncertainty
It might not be surprising that patients receiving more extensive treatment are more fearful. Yet it could have gone the other way: some commentators have previously argued that more varied and extensive treatments could signal to the patient that every possible weapon in the armoury has been used to eradicate the disease. This, went the logic, should therefore strengthen their belief that the cancer has been “cured”.
But if this school of thought seems confounded, we did find indications that the correlation between cancer fears and receiving chemotherapy has been weakening over time. This may mean that in future, the relationship won’t be there any more.
It might be that clinicians are explaining chemotherapy treatment better than they used to. It may be that they are providing greater reassurance or possibly that patients are coming round to the way of thinking of the other school of thought – increasingly believing that extra treatment over and above surgery is important to reduce the risks of a recurrence.
Yet when it comes to radiotherapy, we found no equivalent decline in fears. It could be that patients see radiotherapy more as a risk factor for a new cancer than a “cure” compared to how they see chemotherapy - though this is speculation and would need to be interrogated further.
Of the many different types of cancer patients that have been investigated, breast cancer patients show the strongest correlation between chemotherapy and greater fears of recurrence. Again speculating, it may be that medical teams are more open with breast cancer patients that they are giving them chemotherapy because of the risk of recurrence. If so, these patients may concentrate on the mention of recurrence rather than the success that chemotherapy can provide. If the finding is replicated in further reports, it would need further investigation.
We are now focusing on how we can assist patients in making sense of the experience of diagnosis and treatment for this life-threatening disease. We know that once patients develop the fear of recurrence, it tends to endure and is difficult to reduce. It is therefore important to try and prevent these fears from taking hold.
Our group at St Andrews, along with colleagues at other universities in Scotland and beyond, are developing ways to assist cancer teams to support patients during and following treatment. We have already developed a programme called AFTER (Adjustment to the Fear, Threat or Expectation of Cancer).
AFTER provides instructions and a manual to help specialist staff engage patients who are moderately or very afraid of recurrence. It has proven useful in reducing fear levels in the short term. The next steps are to better understand the focus of these fears, how often they are on patients’ minds, and how we can help them to cope and prevent these thoughts from getting out of hand.