Fear of Recurrence and Progression of Disease

"It is quite a balancing act between transforming fear into motivation and also accepting fear"

Fear is an intense and primal emotion, an almost involuntary response to danger which manifests itself in a heart pounding rapidly in our chest, heightening our senses. Maybe a rush of adrenaline wipes all rational thought from our minds. We feel a strong impulse to hide or flee.

 

    But when we are told we have breast cancer there is nowhere to run and nowhere to hide. Our fears are fuelled by both 'the known' - that we have a life-threatening disease and 'the unknown' - by uncertainty and apprehension, by an outcome which feels completely outside our control.

 

    Fear of recurrence is real. Fear of recurrence can happen without any triggers or with triggers for example when we experience pain, fatigue and new symptoms, or health difficulties following treatment. We can be in a dilemma of what to do, when to seek medical advice or what we should see as 'normal'? Many of us have experienced 'scares' - bone pain, coughs, headaches, 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 have experienced a local recurrence or metastatic (secondary) breast cancer.

 

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

 

    Although fear of recurrence never goes away fully, the longer the period of time that’s elapsed from a primary breast cancer diagnosis, the frequency of how often our thoughts turn to recurrence and progression can lessen. However, it is also acknowledged that often our fear and anxiety creeps upon us without warning after periods of time when we’ve had respite from it. Within our network, it’s acknowledged that this is hard to manage.

 

    Another recurring theme is that minor aches and pains can lead to the bias of our brains suggesting that we have secondaries growing somewhere in our bodies. Perhaps this is due in part to the loss of confidence in our previously healthy body prior to the development of breast cancer and the vulnerability this creates, along with uncertainty about our future? Long term side effects from aggressive treatments such as chemo or Tamoxifen or ongoing AI medications and early menopause can create symptoms that mimic secondaries and also make us feel older and wearier.

 

    We feel that our family and friends, who only see the exterior of us and who can’t possibly know how we feel inside, want to think of us as being ‘fine now', because they don’t possess the insight into recurrence that we do. This may also be due, in part, to active treatment regimens finishing, resulting in our physical appearance generally looking well, with often no outward visible signs of the cancer treatment we endured. For women with secondary breast cancer pubic understanding is limited. Our treatments do not make us better but simply help towards our metastasis being manageable and 'stable'. The real fact is that we are incurable.

 

    Our predisposition to anxiety prior to our diagnosis of breast cancer is something many of us believe may impact upon our ability to cope with our anxieties and fears generally, following a diagnosis of the disease.

 

    The emotional value of our BRiC network is really highlighted by those of us who feel that others close to us will never fully understand our fears because the breast cancer diagnosis didn’t happen to them. There is a shared empathy that exists within the group, which confirms the life enhancing and affirming nature of our very supportive community. This is very gratefully acknowledged.

 

    With around half of our members living with secondary breast cancer, the experience of those members adds another layer to the fears around recurrence, in relation to how long treatment regimes can achieve stability in the metastatic growth of the disease, which drugs will be accessible in second and subsequent lines of treatment and the emotional toll this takes on our ability to lead a good quality of life. Fears around death and dying are inextricably part of that.

 

    The COVID-19 pandemic has caused millions of people in the UK to feel anxious about their health; we, as a community of people within that, have had an extra layer of anxiety added to our already often-burdened mental wellbeing. For many of us revisiting our fears of recurrence, is essential to help us build resilience. Acceptance that we are never quite the same person we were prior to our diagnosis of breast cancer is part of that, which does not mean to say that we can’t feel strong, we just wear our strength and courage in a different way to those outside of the breast cancer community.

 

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 or we fear being dismissed as ‘making a fuss’ or being a hypochondriac*. 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. How have you been dealing with and managing possible signs of recurrence?

* Worryingly, a recent report by (Breast Cancer Now, 2020) shows that around 25% of women treated for primary breast cancer in the UK consulted their GPs around 3 times before they received their metastatic diagnosis of breast cancer and 41% said they were not taken seriously. In fact, 20% of women were treated for another conditions prior to receiving their diagnosis.