Our mothers, ourselves and risk literacy

The web is on fire with Ms Angelina Jolie’s honest and unsentimental account of her elective, prophylactic double mastectomy, appearing in the New York Times. She writes about her mother, who died at 56, having suffered cancer for a decade. She also writes about how she is a carrier of the BRCA1 gene. Her risk profile, she writes, was estimated at “87 percent risk of breast cancer and a 50 percent risk of ovarian cancer”. This risk would manifest itself before menopause is reached.

Not for me to comment on how our mothers – living or not – continue to shape our lives. I lost mine when I was 4. As far as I am concerned, I will never find out what she may or may not have suffered from, had she lived to age 46 (which was the age at which Ms Jolie’s mother’s cancer was diagnosed, according to publicly available information). Or longer. Every day I live defies all risks I may or may not know of.

But in this age of “austerity”, and living in a country with a publicly funded healthcare system being ravaged by budget cuts and the looming threat of privatisation, I worry. Alas the NHS’s postcode lottery is all too well-known for us to hide from it.

When TV celebrity Jade Goody died of preventable cervical cancer at the age of 25, it increased the uptake of pap smears in the NHS. When Kylie Minogue made the news of her breast cancer public, there was a 20-fold increase in the uptake of mammograms and early screening. There may now well be a worldwide surge in the uptake for genetic testing for BRCA mutations, which may be attributable to Ms Jolie sharing her experience.

Which is not all bad news. An estimated 20000 breast cancer related deaths could be prevented every year in the UK, not all attributable to advance knowledge of genetic markers.

I am sure you all know everything I have written so far. So I come to my main point. It is both a policy concern and a societal concern.

Risk literacy in the general public is rarely if ever discussed, even as risk communication remains ever-present, slightly sensationalised, yet incomplete or poor. For instance, BRCA mutations are almost exclusively discussed as a risk factor for breast cancer, following which ovarian cancer. Why not discuss that BRCA mutations may almost double the risk of cancer of the fallopian tubes? Which can be detected early and treated.

We still haven’t fully explained, in plain English, what it means to have a risk of X% versus Y% of getting A or B type of cancer. Risk really is a two-part concept: an undesirable outcome and the probability that it will come to pass. The probability may be expressed in numerical terms — making it sound, to most people, very accurate and reliable, which may not be the case — or in generalised terms such as “negligible”, “considerable”, “very likely”. Thereon it is a case of how one’s own risk propensity matches up to the description of a risk. That is what decisions are often guided by.

Here’s a story. A friend of mine, who had her first child at age 34, was told she had 1 in 1200 chance of having a baby with Down’s Syndrome. She said she took the chance. She is a highly educated, mathematically literate, senior pharma industry executive and struggled to explain to me what it really meant. To take that chance. She finally said: “Whatever I get I shall deal with.”

So that is what it comes to. Dealing with it.

Ms Jolie dealt with her risk in a certain way and shared her decision in unsentimental language with the broader public. It will increase awareness about BRCA for sure, but will it lead to better-informed decisions? Hard to say. Not everyone who gets tested — with the myriad (if you will ignore the pun**!) of genetic testing firms mushrooming in the market — will have access to the sort of counselling Ms Jolie might have had access to. Increasingly the choice to get screened or not is being left to the patient, even as this review took place because too often women are informed of the benefits of screening but not the harms. Back to risk literacy then.

Ms Jolie’s candid sharing of her experience needs to ignite a debate on risk literacy — not just BRCA mutations, breast cancer, or preventative mastectomies.

I have a final point. Men get breast cancer too. Because the absolute risk is low, the increase in the chances of a BRCA mutation carrying man getting breast cancer by age 70 or beyond is dramatic. This is also the age, when a lot of medical and health insurance policies start to enforce exclusions on the insured. With institutionalised differences between how men and women are treated by the healthcare system, surely risk communication about BRCA should include the risks to men, shouldn’t it?

Of course, I care about the issue as it affects men — I have only one parent left and it is my father.

(** If you missed the pun please read this. As well as the history of the company. Thanks.)

3 Replies to “Our mothers, ourselves and risk literacy”

  1. Further to this, risk is rarely a zero-sum situation. There is not the risk (the dangerously mutated BRCA gene) and the risk-free solution. The need to balance the risk of the illness and the risk of the treatment. Many doctors (writing from the US) are not good at identifying the risk/reward part of the equation.

    Bilateral mastectomy is a life-altering and potentially life-threatening procedure that is best approached with clear knowledge of all the risks involved. That is, I am certain, part of the reason for restricting some procedures for those over 70. The assumption is that the cost in health and money vs. the risk and the assumed remaining life span is not a good bet.

  2. In the event of ‘undesirable outcome’, which is sometimes irreversible in nature, the numerical value of probability loses significance – it becomes 100%. Then the only thing that matters is how one deals with its consequences/aftermath. Hence your point about risk propensity is very important. Much beyond the ‘attention-grabbing’ numerical value of probability is the territory of – if the ‘undesirable outcome’ becomes reality, will I be able to deal with it and how will I deal with it.

What do YOU think?