Saturday 15 July 2017

Weekly Discussion Summary ~ Dealing with fear of recurrence

How do we deal with and manage worrying symptoms once we've received the 'all-clear' and finished our active treatment for breast cancer?

The end of active treatment for a primary diagnosis of breast cancer carries with it a mixed emotional response - there is joy and exhilaration that we have finally reached what has been our goal and focus for a very long time. But, we are left alone to cope with all the after-effects of treatment and at a vulnerable point psychologically, as our fear of recurrence may dominate our thoughts.

We are encouraged by our treating teams to be vigilant for signs of recurrence, to report any symptom or pain that lingers and disturbs us. It is perfectly natural then, for our attention to be directed towards any signs so that we can detect anything sinister early, to have a sense of control over the course and progression of any possible cancer-related symptom.

Almost all of us described:

i) experiencing pain, fatigue and new symptoms, or health difficulties following treatment,
ii) the dilemma of what to do, when to seek medical advice or what we should see as 'normal'?
Many of us had experienced 'scares' - bone pain, coughs, ambiguous scan results, lumps requiring biopsy - and going through further investigations and agonising waits for results. For most of us, these 'scares' are usually followed by enormous relief at finding out we are cancer-free, but many of us in the group have experienced a recurrence or secondary breast cancer.

Women with secondary breast cancer described a range of experiences - having symptoms dismissed by health professionals, or long delays; while others felt as though they had been struck by a bolt from the blue, sometimes many years after their original diagnosis, at a time when their fears had subsided. Women with secondary breast cancer experienced vigilance in a similar way to women who had had primary breast cancer, but it is directed at symptoms which might indicate a progression of their disease.

Naz explained that being vigilant for signs of threat is known to fuel fear and anxiety. This is because vigilance is often related to a tendency (or 'bias') to see 'ambiguous' symptoms in a threatening way (for instance, do we think that a persistent cough is secondary breast cancer, or, the lingering after-effect of a virus?) We were all aware of the implications that this vigilance has on our day to day functioning, occupying our thoughts, absorbing our attention and energy, especially when we feel ill or are experiencing pain.

How do we cope?

Some of us seek help straight away. Others adopt a 'two-week' rule (or three) whereby we wait for several weeks to see if our symptoms go away. A few of us avoid going to our GPs because we know they will arrange investigations which we will find stressful. Good advice is to try and remind ourselves that we got sick before we had cancer; that cancer is only one possible explanation for our symptoms. It is, however, a challenge to be vigilant to new symptoms, without over-estimating the consequences of cancer (or other) related symptoms.

Naz explained that our ability to direct our attention towards and away from signs and symptoms that may or may not signal recurrence is largely dependent upon our mental flexibility. She explained her view that it might not be the vigilance for threat that is disruptive to us, but our over-interpretation and the way we can get stuck, going over and over symptoms which we as a potential threat - something Naz called ‘inefficient attentional control’. Because when we are diagnosed with a life-threatening illness like cancer, our emotional brain systems tend to fuel attention to signs of threat simply because we want to survive, it is hard to exercise attentional control.

How have you been dealing with and managing possible signs of recurrence?

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