Exploring psychological consequences for BRCA+ women in the post-Covid era
by Grace Brough1, Douglas Macmillan2, Kristjan Asgeirsson2, and Emma Wilson1
1Division of Epidemiology and Public Health, University of Nottingham
2Nottingham Breast Institute, Nottingham University Hospitals NHS Trust
Whilst the global female population has a 12.5% overall lifetime risk of developing breast cancer and a 1.3% risk of ovarian cancer (Howlader et al), the risk for those with a pathogenic BRCA1 or BRCA2 mutation is 60-70% and 10-20% respectively (van Egdom et al). BRCA1 mutation carriers have a particularly high incidence of triple-negative breast cancer (TNBC) (Greenup et al) for which treatment options are more limited and always include chemotherapy (Bianchini et al; Collignon et al).
In the NHS, asymptomatic women with at least a 10% estimated chance of having a BRCA mutation are offered testing (NICE). Knowing you are at high risk of breast cancer and the increased likelihood of TNBC is a well-documented cause of anxiety (Wenzel et al) and many women describe having a BRCA gene mutation as living with a ‘ticking time bomb’. Bilateral mastectomy with or without reconstruction is the only proven method of drastically decreasing risk and can improve quality of life (McCarthy et al) and decrease anxiety (Rebbeck et al) for correctly selected cases, despite its potential negative outcomes (Gahm et al).
The strongest predictor for choosing to undergo risk reducing mastectomy is having a first or second degree relative die from breast cancer (Singh et al), a factor associated with fear, anxiety and vulnerability to this disease. Most women choosing it have clear and long-considered reasoning and have been prepared for it through well-established pathways guided by genetic counsellors, specialised surgeons and nurses. It is however, classified as elective surgery. As such, waiting lists for risk reducing mastectomies are impacted by other healthcare challenges and needs.
Being on NHS waiting lists causes anxiety across all specialities (Carr et al). With an estimated 10 million people on NHS waiting lists in the post-COVID era, levels of health-related anxiety within the population are anticipated to significantly increase. For BRCA mutation carriers, the prevailing fear is that they will develop breast cancer whilst on the waiting list. This reality is related to the length of time on the waiting list and represents potential conversion of a risk reducing scenario to one of chemotherapy and cancer surgery, often with other treatments, and all the life changing and life threatening implications of cancer diagnosis.
In pre-COVID times, there was a 18 week target time from referral to treatment for risk reducing mastectomy (UK GOV). Due to COVID, the majority of elective surgery has been put on hold and Breast Units now anticipate at least a 2-year waiting list for non-cancer surgery, such as risk reducing mastectomies, delayed reconstructions, and revisional surgery. Prioritisation is a difficult necessity.
In addition, breast screening services ceased or were significantly curtailed as a result of COVID related restrictions, and this adds to an already complex situation for BRCA mutation carriers. Not only may they now get breast cancer whilst on the waiting list, but they are denied the reassurance afforded by negative screening, or potentially a diagnosis may be delayed (Maringe et al).
Combining pre-existing anxieties of being a BRCA mutation carrier, new waiting list anxieties, and wider COVID general health anxieties, the post-COVID era has the potential to see significant levels of psychological burden in this population, which could negatively impact mental health and quality of life. Providing additional psychological support is likely to be the short-term solution, though this is also resource limited. In reality the collateral impact of pandemic related consequences for healthcare in this particular group may not be realised for some time.