OK, so yesterday the news was literally full of the Tamoxifen story. And most of the articles that splurged out yesterday morning contained inaccuracies, which really pissed me off. I don’t even know how much journalists get paid to write articles for national media outlets, but I reckon it’s probably more than I earn attempting to educate the nation’s teenagers.
Lazy journalism – not something I am fond of, but an apparent by-product of the current era of social media inspired news reporting. Get the story out there ASAP, ideally before someone else does, but if you’re not first, make it better than the competition’s. And bigger. Doesn’t matter if it’s inaccurate, correct it later when some pedantic member of the public posts a whiny comment.
You may never have heard of Tamoxifen. I’d never heard of it til six months ago either. It’s a drug widely used in the treatment of breast cancer when hormones are involved (this accounts for about 4 in 5 breast cancers). Hormone positive breast cancer tumours rely on oestrogen and/or progesterone to grow and multiply. Tamoxifen works by attaching to hormone receptors in breast tissue cells and thus preventing oestrogen and progesterone from coming to the cancer party. It is the breast cancer treatment equivalent of rushing home for sex with your partner and finding your parents have turned up for a surprise visit. It’s widely taken by breast cancer patients after initial treatments for five years, although recent studies have shown it may be more effective to take it for ten years. Often taken alongside another class of drugs called aromatase inhibitors, which lower the levels of oestrogen in the body, Tamoxifen is given to both pre and post-menopausal breast cancer patients.
OK, there’s the basics. So what’s the new news?
NICE (the National Institute for Health Care and Excellence – who apparently pay someone a lot to come up with friendly sounding acronyms) published guidelines on something they’ve been ‘considering’ for several months now: prescribing tamoxifen as a prevention for breast cancer. This is a hugely significant step in the breast cancer battle, but it is not a prevention for breast cancer. Breast cancer is not cured. It’s not a vaccine. And it’s only available to women considered at high or moderate risk – namely those carrying one of the identified defective genes, and over the age of 35. What annoyed me was not the news, that in itself is great, but the sloppy reporting of the news.
Here are some of the slapdash efforts in journalism:
The first report I read was from the usually reliable (when it comes to cancer reporting anyway) BBC. Their report was OK, but it didn’t make it clear who Tamoxifen was for, and tended to glorify the choice women would now have between a mastectomy and medication. It did say that in Scotland, women would be eligible if they had two or more close relatives who’d had breast cancer, but it didn’t say what the numbers were for England. Maybe English patients don’t need to know the criteria because they can go ask their doctor if they’re worried, but Scottish people can’t get an appointment because all the surgeries have been converted to methadone clinics?
Irritated, I checked the Guardian, who had made a glaring error in the fourth paragraph stating that Tamoxifen was previously unlicensed for use in this country, despite it having been administered for several decades. Obviously what they meant was that it wasn’t licensed for use as a preventative drug, something NICE make clear in their guidelines. This error has now been amended with a footnote explaining all, so I’ve decided to forgive them. But it’s things like this that make me wonder how many mistakes we absorb daily from the instant style of reporting that is now the norm. I only saw the amendment in the Guardian article because I knew it was a mistake, and checked back today to see if they’d corrected it. How many times are we fed misinformation that we blindly believe? And more importantly, on what scale?
There wasn’t a great deal of explanation in any of the reports, and none seemed to be able to explain the difference between genetic breast cancer and other breast cancers, although most reports were able to repeat the figure that genetically inherited breast cancer makes up about 20% of the total breast cancer diagnosed. Which brings us nicely on to genetic breast cancer testing. The new NICE guidelines recommend testing for people with a moderate risk, up to 20%, and treatment should be jointly decided by the patient and the health care provider. That’s all very good, but as anyone who’s had breast cancer, has a daughter, and wants testing will tell you, it’s not widely available. You need to have two close relatives – mother, sister, aunt – who’ve had the disease to be eligible for the genetic test. I can’t get one to find out if I carry the gene because none of my family have had hormone related cancer before. My cousin had skin cancer. My granddad died of liver cancer, but who knows if it started in his prostate. Either way, I’m not eligible so Holly gets to wing it like everyone else. I do hope that by the time she’s in her mid 30s, research will have advanced enough for doctors to be able to demonstrate exactly which chromosomal abnormality triggered the massive reproduction of mutant cancer cells and use targeted treatments to either treat or prevent cancer. Who knows, perhaps Holly, with her current fascination in biology, science and philosophy, will go into this field herself.
One more thing on the subject of NICE guidelines, they are just that – guidelines. As I am all too aware from seeking one round of IVF treatment prior to starting chemotherapy, the Primary Care Trust in your area may be flexible or inflexible in how they interpret those guidelines.
Not many of the reports mentioned the often horrendous side effects of Tamoxifen. Some casually stated the side effects only last about 6 months then level out, and some news agencies interviewed someone on Tamoxifen who didn’t appear to be experiencing many of the common symptoms. These include hot flushes, nausea and indigestion, weight gain, itchy vagina, leg cramps, depression, headaches, blood clots and vision problems. One of the long term side effects of taking Tamoxifen is developing additional cancers in the womb and, as with other cancer treatments like chemotherapy and radiotherapy which can also cause more cancers, these risks need to be balanced alongside the potential benefits of taking the drug.
None of the reports in yesterday’s media (that I read anyway) looked at the opposite side of the story to present a well balanced picture. One of the problems with Tamoxifen use as a preventative drug is getting people to continue taking it. If you’ve had breast cancer, you won’t want it coming back; you’ve probably already suffered worse side effects from chemotherapy and radiotherapy, and you’ll put up with your daily Tamoxifen for 5-10 years because you’d rather not have a recurrence, but people who’ve had breast cancer still stop taking Tamoxifen because they can’t cope with the side effects. Of the estimated 500,000 women in the UK who might be eligible for Tamoxifen as a preventative measure, how many will take it up, how many will keep taking it despite the side effects, how many will feel that reducing their risk by 30-40% by taking Tamoxifen and suffering the side effects is not worth it? These issues are all in the original study and the NICE guidelines, but were generally ignored by the media.
So let’s just be clear: It is fantastic that Tamoxifen is being offered as a preventative drug to a small group of eligible women in this country. This represents a ground breaking new approach to breast cancer prevention in the UK. But this is a small battle in a much larger war, and the media’s job should be to remind people that research is still vital, funding for that research is even more crucial than ever before, trials into the other 80% of breast cancers need to be more focused, and the reporting, in general, needs to be of a higher standard if a well balanced picture is to be presented.
The media is generally not objective when it comes to reporting. This is not news, but it’s still annoying. The German media presents the arming of Syrian Rebels by the UK and France as an almost fatal blow to the European Union because Germany has a vested interest in the European Union, whereas British and French media present the same story as a humanitarian cause. This doesn’t really bother me. Breast cancer reporting does, mostly because pretty much everything I’ve seen come out in the media in recent months has contained errors, and also because it’s personal to me. I’m not objective about breast cancer. But I do expect the media to be objective. Apart from the Daily Mail, I don’t expect anything from them except for bad journalism and scare mongering. Articles like this: http://www.dailymail.co.uk/femail/article-2162179/Cancer-causes-How-teenagers-justify-use-tanning-beds–despite-health-risks.html about how teenagers justify their increased use of sunbeds by claiming, ‘Everything causes cancer nowadays’ – presented entirely without a hint of irony from the newspaper with it’s own online A-Z of scare mongering carcinogenic over-reporting.
And if you’re feeling a bit sorry for the poor, beleaguered journalists, struggling to meet deadlines in darkened offices at 4am in Fleet Street, try Googling ‘should journalists fact check’ – the 35,100,000 results suggest I am not alone when it comes to being annoyed about sloppy media coverage.