One of the most common fears expressed by cancer survivors is the fear that their disease will progress. But few studies have looked at whether this same fear is a cause of distress for people living with CML. In contrast to other cancers, CML is highly treatable with TKIs (tyrosine kinase inhibitors), and long-term outcomes are very good. For example, the most recent analysis found that the proportion of people with CML treated with a TKI who survived five years after their diagnosis was about 95% – roughly the same as for people in the general population without CML (Sasaki and colleagues. Lancet Haematol 2015;2:e186-93).
This led researchers in Germany to speculate that fear of progression would be less among people with CML compared to others living with cancer. To test this hypothesis, they administered questionnaires to 37 people at a CML clinic (Hefner and colleagues. Oncol Nurs Forum 2016;;43:190-197). The median age of participants was 59 years, and they had been living with CML for about 5-6 years. About two-thirds were taking Gleevec, and the others were taking Tasigna or Sprycel.
In contrast to the researchers’ assumption, fear of disease progression was high and similar to what has been seen in studies of people living with other types of cancer. This suggests that anyone hearing the word “cancer” inevitably worries that their disease will worsen – even when the prognosis is very good.
However, a surprising finding was the fear of progression was only ranked sixth overall on the list of worries. The most common fear expressed by people with CML was that their treatment would damage their body. So fear of the medication itself was greater than fear of the disease that the medication was being taken to treat. Interestingly, most people expressing fear about their medication were not experiencing significant side effects. This suggests that the fear of side effects is more troubling than the actual side effects themselves.
The other common fears (in descending order) were: worries about what will happen to your family if something happens to you; being afraid of needing severe medical treatments at some point; feeling nervous prior to visiting the doctor or having a test; and being afraid of pain.
Fear of the disease progressing was higher among those taking Tasigna or Sprycel. But this was likely due to the fact that some had been switched to one of these more potent medications because they hadn’t responded to Gleevec, so they would have been more concerned about getting their disease under control.
The conclusion of the study was that fear of progression (and other fears) is very common among people living with CML. The authors of the study suggested that this may be due, in part, to the new era of oral medications used to treat cancer. While oral therapies enable you to take your medication at home instead of in hospital, there’s an added burden of responsibility of taking the drug properly, and there’s more opportunity to nurse your fears when you’re alone and away from your healthcare team. A quick call to your CML clinic may ease some of those fears and put your mind to rest.