The Angelina Jolie story has done its time in the news cycle and as the water cooler conversation of the week – and rightly so. The decision to undertake any form of surgery isn’t easy. To do so as prophylaxis (preventative medicine), even harder. To do so with body parts that carry an emotional weight beyond their physical significance, hardest of all.
There aren’t many body parts that we consider removing “just in case”. Appendices (appendixes for our American readers) are usually left alone – though there is discussion about prophylactic surgery for those going on Winter expeditions to Antarctica where evacuation isn’t easy. Thirty years ago if one child in the family had their tonsils out, it seemed sensible to remove them from all the siblings as well. And in the circumcision war debates, prevention of penile cancer, HIV and partners cervical cancer are now rolled out as arguments by those in favour of the procedure.
The Angelina Jolie case is grounded in a bit more fact than most of these discussions, largely because her genetic profile made the statistics easy to analyse. The BRCA1 and BRCA2 genes are now well quantified as risk factors. As our regular readers know, we think there is a lot of misuse of data in the medical world, but from what we’ve read Ms Jolie’s assessment of her own risks seemed pretty accurate. It raises the question who else should have a prophylactic mastectomy.
Our general approach – and the discussions would vary enormously from patient to patient – is that if you have a first degree relative (parent, sibling or child) with breast cancer we’d discuss how to measure your risk more carefully and if you had 2 or more first degree relatives or several second degree relatives (aunts, cousins etc), it may be worth talking to a familial cancer or genetics clinic. Our doctors are happy to guide you through the process and refer you to the appropriate people.
One interesting story that crossed our desk is that of a male who has requested a prophylactic prostatectomy because of his genetic profile. The gentleman was 53yrs old, had a normal PSA test but did have a strong family history of prostate cancer and was shown to have microscopic dots of cancer in his prostate when he had a biopsy. (How he managed to convince doctors to perform a biopsy when he had no symptoms and a normal PSA is not clear!)
His surgeons reportedly said that whilst it was not usual to remove a prostate in men without problems, the risk of BRCA +ve men developing metastatic prostate cancer is three times the risk of other men. On that basis plus the known small focii of cancer, surgery was agreed to.
The implication however is controversial. How much risk is too much? Would you have a mastectomy if you knew you had a 50% chance of cancer? What about 10%? What about 1%? Would you want your prostate out – risking impotence, incontinence and the risk of infection – if you knew that your risk of getting prostate cancer (which might be treatable anyway) was 5%, 25%, 75% ?
Another issue is ethical. If you have cancer – you have no obligation to ring your cousins and tell them. If you know you have a cancer gene – and therefore maybe so do they – are you morally obliged to let them know, even if it compromises your own right to privacy?
Over the past hundred years, the two big changes in medicine have been the development of anaesthesia and antibiotics, which between them have completely changed the way medicine in practiced. It seems pretty clear that the biggest change in medicine over the next fifty years will be development of medicine tailored to everyone’s individual genetic profile. Such knowledge will provide valuable information – but it might make some decisions even more difficult!