Everyone remembers the iconic moment in 2013 when Angelina Jolie underwent a double mastectomy to protect herself from cancer. Jolie had undergone genetic testing, which had revealed that she carried a mutation in the BRCA1 gene that dramatically increased her risk of contracting breast cancer. Jolie’s genetic testing results meant she had an 87% chance of eventually developing breast cancer: a double mastectomy was therefore a much needed measure to protect her from an almost-certain diagnosis.
We live in a celebrity-obsessed society, which meant that Jolie’s procedure attracted a huge amount of press (including a fair share of crazy conspiracy theories). In this particular case, all the media attention ended up having a positive effect, raising more awareness for breast cancer and genetic testing and causing the so-called “Angelina Jolie Effect”. Jolie received huge amounts of admiration and praise both from the scientific community and from cancer charities and patients groups, all of which hailed a new era of improved testing and more empowered choice for patients at risk. and The “Jolie effect” ended up normalizing preventative mastectomies and having a measurable impact on the choices of women at high risk of breast cancer, who became more willing to consider the procedure. In fact, because of her very public stand, patients are more likely to be referred for genetic testing and to be referred appropriately for their condition, all of which are undoubtedly going to have a very positive impact on women’s lives over the course of the next few decades.
However, preventative mastectomies are still not entirely normalized. In fact, while the attitude of the public seems to be changing in a positive way, the way the media handles this issue still has a lot to go in terms of progressive thinking. On April 12th, readers of popular news sites including The Daily Mail (which is still the most read newspaper in the UK) and Health Day were awakened with shocking news. The Mail headline in particular read “Mastectomy scandal: Half the women who get bilateral removal after genetic testing do NOT have cancer gene – but their doctors misread the data, shock study claims”. In other words, The Jolie Effect has gone too far. Women are genetic testing like mad and doctors who don’t know what they’re doing are going through with ruthless mastectomies that are neither necessary nor helpful because they don’t understand the tests. That sounds horrifying. In fact, a bit too horrifying.
The study these articles are citing is a recently published article from the Journal of Clinical Oncology. First of all, the study looks at patients with early-stage breast cancer (which means they have already been diagnosed and therefore have nothing to do with preventative mastectomies, which obviously takes place before the patient contracts cancer). The patients within this study are divided into three groups: patients with no mutations, patients with mutations within the BRCA1/2 that are not for certain linked to an increase in cancer risk (known as VUS mutations) and patients with mutations in BRCA1/2 that are definitely linked to breast cancer (i.e. what Angelina Jolie has). The study shows that even though only the latter group benefits from a double mastectomy, several patients with VUS mutations and patients with no mutations at all also underwent double mastectomies (see graph on the right). The significant aspect here is that patients with VUS mutations are not statistically more likely to have double mastectomies than patients with no mutations at all. This clearly suggests that there is a certain amount of patients who will receive inappropriate mastectomies, which while it is undoubtedly a problem has nothing to do with doctors misunderstanding test results. In fact, the study itself suggests that this might be at least partially linked to patients being more aware of the procedure and requesting it for themselves.
So where did the media get their information? The other thing this study shows is that doctors with more experience in treating breast cancer patients are more confident with their understanding of genetic testing and become better and better at using genetic testing results to inform their decisions. This in itself should come to no surprise – practice makes perfect. In fact, about half of the surgeons with little to no experience in the field would treat patients with VUS mutations the same as patients with mutations known to increase the risk of breast cancer. Bingo! To recap – the headline states that half of the mastectomies carried out in the US are needless because doctors don’t understand the difference between dangerous and VUS mutations. What the study shows is that half of the most inexperienced surgeons would treat patients with either type of mutation equally – but in reality patients with cancer-inducing mutations are more likely to receive a mastectomy. Patients with VUS mutations have the same chance of getting a mastectomy than patients with no mutations at all. Therefore, the doctors who do not differentiate their treatment according to what type of mutations the patient has don’t seem to be making a difference – crucially because they are a minority (just over 30%) and because they are probably not breast cancer specialists and possibly work in a team with other clinicians who are.
The bottom line
The “Jolie Effect” has spread awareness of genetic testing and breast cancer prevention, which is undoubtedly a wonderful thing. Genetic testing in general is becoming more and more common, which is increasing the quality of care from patients across the board. The Mail headlines are flat-out false and ludicrously sensational. There is no scandal. What studies like this one highlight is the fact that women without cancer-causing mutations (VUS mutations or no mutations at all) still receive mastectomies in a minority of cases. This means that in those cases genetic testing is not being exploited to its full potential to spare these patients what is a painful procedure that might not be the best option for their treatment. Working with clinicians to reduce these numbers is going to be essential going forward, as well as educating the public on their options both for preventative care and for treatment after diagnosis. Terrorizing women with predatory headlines is not the way to do that.