When Jesse J , Christina Applegate and Katie Thurston spoke openly about their mastectomies, their candour did more than share private struggles. It highlighted a procedure that, while often life saving, is unevenly available depending on the genetic lottery into which someone is born.
Authors
- Ahmed Elbediwy
Senior Lecturer in Clinical Biochemistry / Cancer Biology, Kingston University
- Nadine Wehida
Senior Lecturer in Genetics and Molecular Biology, Kingston University
A mastectomy - the surgical removal of breast tissue - is usually offered after a breast cancer diagnosis or when doctors consider a person's inherited genetic risk so high that prevention becomes the safest option. For many, it can mean the difference between life and death. Yet who qualifies is dictated less by need than by which specific genes are affected. This disparity reveals deeper questions about genetics, prevention and medical equity.
The human body contains trillions of cells carrying out processes essential for survival. These processes are not flawless - billions of cells die each day as part of a system designed to limit damage. Central to this system is the copying and expression of DNA, the genetic script from which our bodies are built. Mistakes in this process sometimes lead to mutations.
Most are harmless, but some affect critical genes that control cell division. Tumour suppressor genes are particularly important: they are the brakes that keep cell division under control, guarding the integrity of our DNA . When they fail, cells can multiply unchecked, laying the groundwork for cancer.
Few gene families are as well known in this context as BRCA . Mutations in BRCA1 and BRCA2 are linked to particularly aggressive forms of breast and ovarian cancer.
These mutations can be inherited from either parent and confer a lifetime breast cancer risk of more than 60% . This knowledge has transformed cancer prevention over the past three decades, especially after the highly publicised decision by actress Angelina Jolie to undergo preventive surgery.
Jolie's mother, Marcheline Bertrand, died of ovarian cancer, and genetic testing revealed Jolie carried a faulty BRCA1 gene. She chose a double mastectomy and later removal of her ovaries. Her openness about the decision is credited with an 80% increase in women undergoing BRCA testing .
British actress Kara Tointon also had a double mastectomy after genetic screening.
When the wrong mutation means fewer options
The ripple effect of these cases was profound: awareness of BRCA mutations soared, genetic testing became more common, and mastectomies became framed not only as treatment but also as a preventive strategy. Yet the focus on BRCA has obscured the broader picture.
Researchers now know that breast cancer can arise from mutations in a range of other moderate-risk genes , each of which raises risk two to fourfold. For patients carrying these mutations, however, mastectomy is rarely an option.
The barriers are both scientific and economic. Evidence remains limited on whether preventive surgery benefits people with moderate-risk mutations.
Clinical guidelines in the UK, developed primarily around BRCA and other high risk genes, do not include them. And cost is a powerful constraint.
Expanding mastectomy access would mean more operations, more reconstruction, more follow-up - a strain on health systems already under pressure. But the potential benefits are substantial.
One recent study suggested that if mastectomies were offered more widely, beyond the BRCA population, up to 11% of additional breast cancer cases could be prevented . The long-term savings, both in human suffering and in healthcare expenditure, could be significant.
This disparity exposes a fundamental inequity in cancer prevention. While people with BRCA mutations benefit from decades of research and the inclusion of their risks in clinical guidelines, others with equally worrying family histories but different genetic profiles are excluded. The result is a two-tier system: one group with access to the most aggressive preventive care, another left with surveillance and uncertainty.
The problem is only set to grow. As genetic testing becomes cheaper and more widely available, more people will learn that they carry moderate-risk mutations. Without updated research and revised guidelines, thousands will confront elevated cancer risks without the option of the same preventive measures as others. It is a dilemma that stretches beyond oncology - a test of whether medicine can deliver on the promise of personalised care.
For now, preventive mastectomy remains both a triumph of modern medicine and a reminder of its limits. It saves lives, but not equally. As one analysis concluded, true personalised care means ensuring all patients, regardless of which mutation they carry, can access the full range of preventive options . Until then, access to this life-saving surgery will depend not just on medical need, but on genetic chance.
The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.
