07 April 2014
ByAppeared in BioNews 749
Angelina Jolie's breasts were surgically removed last year. Jolie carries a 'faulty' BRCA1 gene, magnifying her risk of developing breast and ovarian cancer. Given her mother died of ovarian cancer in her mid-50s, Jolie opted for risk-reducing surgery. The actor's story was the inspiration behind 'Relative Risk: Breast Cancer and Genetics' - the first of four events organised by the Progress Educational Trust (PET) and supported by the Wellcome Trust as part of the 'Breast Cancer: Chances, Choices and Genetics' project.
The panel kicked things off. Baroness Delyth Morgan, chief executive of the charity Breast Cancer Campaign, spoke about how understanding genetics is 'critical' to overcoming and preventing the disease. Baroness Morgan also introduced two topics that played a pivotal role in the evening: risk and screening.
Three clinicians followed. Professor Gareth Evans explained what relative risk means and the best ways of helping patients understand it. Perhaps it was just my overly-liberal sensitivities (or overly-sensitive liberalities) but I did cringe at his insistence in telling us 'what women understand' about risk. But there was something quite gloriously sincere about him that maybe must be forgiven.
Professor Diana Eccles talked about the differences between the oft-quoted average risks compared to the 'very moderately precise' calculations of individual risk. My inner anthropologist perked up at her comments on how expectations, culture, and personal and family history shape someone's motivations for seeking preventative surgery. What we bring in to our GP's office affects - and limits - the options available to us. As, indeed, does a GP's own experiences. These I find to be subtly disconcerting thoughts.
The last of the clinicians was Professor Gordon Wishart, a surgeon who took us through a cut-by-cut account of a mastectomy. (Around this point, I realised I'd been mispronouncing the word all this time.) It made for uncomfortable listening, especially delivered in his calm Scottish tones. As stomachs settled, Professor Wishart described how he thought preventative surgery was a 'proportionate and appropriate choice' for certain people.
Such people included the last of the panel members, Kerry Andrew. Ms Andrew's mother and grandmother both developed breast cancer at young ages. Having inherited a BRCA1 mutation, she underwent preventative surgery at the age of 24. She spoke about how the discovery of pre-cancerous cells following surgery confirmed for her this was the right decision. Ms Andrew also touched on the (currently uncommon) practice of embryonic screening for BRCA mutations, saying, 'the gene is a big part of my life but only a part of my life'.
Next came the audience's turn to put their questions, comments and stories to the panel (and, I think, to one another).
Access to screening was a big concern: the 'best' ages to begin and end screening, the reluctance to stop screening low-risk women, and whether or not screening should be stratified. This topic generated a lot of chatter and concern among the audience members who shared their stories of living with BRCA mutations, of their mastectomies and oophorectomies.
Baroness Morgan made the important point that all screening procedures produce some proportion of false positives and false negatives. There is harm in over-diagnosis leading to over-treatment, especially - as Professor Wishart pointed out - when restricted resources mean an increase in preventative surgery might reduce the availability of surgery for treatment.
My experience of cancer is limited and indirect (I can't even pronounce 'mastectomy', apparently). For that, I consider myself lucky to have felt like an outsider at this event. Up until now, BRCA was just an abstract concept, a disembodied gene. Hearing people speaking with candour about carrying mutations, what it meant to them and what it means to their families was so eye-opening.
What happens when you find out you're a carrier? How do you begin to comprehend the ways this information might change your life? How do you tell your family, especially your children who might inherit the mutations? I cannot hope to do these questions justice here, beyond raising them in your mind.
It made my nerdy heart swell to see the clinicians and the audience grappling with these difficult topics - and I mean difficult not just conceptually, but emotionally. As someone who merely writes about genetics, it's such an illuminating shock to be confronted with the sheer humanity of it all.
Cancer scares me. My way of dealing with the discomfort has always been through distance and ignorance, but that's not good enough. Others tackle it head on, unshirking and with vigour. They have faced the harshest realities and the hardest decisions. Go to the next event and sit among them. This evening was all the better for their fearlessness and their voices.