Breast cancer rates fall in the UK, but survival rate still amongst lowest in Europe
There was good news this week; research published in the British Medical Journal (BMJ) showed that deaths due to breast cancer have fallen by a third in Britain since the 1980s, to 28.2 per 100,000 women, marking the biggest improvement in Europe.
And those at Cancer Research UK, Breast Cancer Care, Breakthrough Breast Cancer, etc. deserve a pat on the back for the tireless work they have done to push these improvements through, and the doctors and nurses who have worked with and listened to them.
Improvements were put down to earlier detection and improved treatment methods. The UK’s breast cancer screening programme was said to be partly responsible for the gain. However, after my article posted last week when Andrew Dilnot, Principal of St. Hugh’s College Oxford, said at the London Computational Knowledge Conference that we shouldn’t trust statistics – I started to think (takes a lot of effort for me!).
Looking ‘behind’ the statistics, as Dilnot recommended, I find the steepness of the fall in death rates is possible, because the UK started off with such a poor record in comparison to Europe. In 1987-9 (starting point for the study), the UK had the highest death rates from breast cancer in Europe. Even now, only Ireland, the Netherland and Denmark rank worse in the table published in the BMJ.
Mike Richards and other Dept. Health officials don’t like it when we point out that other countries had better rates to start with, and why haven’t we yet managed to equal these? They seem to think that Europe will stand still, and in their blinkered way they imagine we are only country that is advancing. And it isn’t just money that makes a difference – Lord Darzi frequently said France spent the same amount overall per person on healthcare (care is funded differently, but he worked out French and Britons paid out same overall).
But as the Patients’ Association says, with cancer care in the news because of cuts in funding, it is also clear that the pressure must be kept on to maintain this improvement.
These figures show that things are improving. People who would have died ten years ago are now alive, which is wonderful news.
But if we want to improve, we must all push, agitate and question why aren’t we equal to Europe?
Response from Michael Baum
Professor Michael Baum has just emailed me:
” I’ve just carefully read the paper in the BMJ on trends in breast cancer mortality in European countries, since 1980. ( Disparities in breast cancer mortality trends between 30 European countries: retrospective trend analysis of WHO mortality data base, Autier P, Boniol M, La Vecchia C et al, BMJ 2010, 341, 335).
There is also an accompanying editorial by Beral and Peto, explaining why mortality trends are more robust than survival estimates that are polluted by the over-diagnosis at screening on the one hand and the under-registration of new cases that are only picked up at the time of metastatic spread on the other hand.So slagging off the UK for having the worst survival in Europe might just reflect the over-diagnosis in screening intense countries like Sweden.
Interestingly enough, whilst England and Wales has the steepest fall in breast cancer mortality since a peak at 1988, Sweden has demonstrated very little fall in mortality. Furthermore the steepest fall in mortality was in the age group <50 in countries with none or low intensity screening in this age group.
These data reinforce my view that the fall in mortality in the UK is in spite of rather than because of screening. Yet the BBC lead on this feature interviewing a woman who claims her life was saved 4 years ago because her cancer was caught early at screening!!!”
Prof. Baum has a huge bio – just Google if you haven’t met him. He was Principal Investigator in the ATAC trials, and is probably proudest of being awarded the bi-annual St. Gallen Lifetime Achievement Award for Advancements in Breast Cancer Research- which comes with a fantastic watch which he wears. He is also author of ‘Breast Beating’ – more info under Books category.
What we can do to improve survival
One effective way of getting cancer patients’ message over is to sign up for Breakthrough’s Westminster Fly In. I work on committees for several cancer charities, and this was the most effective campaignwith which I was involved last year. Mark Simmonds produced powerful speeches at the event, highighting again and again how our cancer treatment lags behind Europe’s – and this year David Cameron and Andrew Lansley have repeated the message. So congratulations to all those who got the message through to politicians – at last.
The next Fly-In takes place October 18th/19th. If you want to get your teeth into a really effective campaign, contact them on www.breakthrough.org.uk, and if they accept you as a delegate (they pay all accommodation and expenses). But be prepared to work very hard.
And make use of Volunteers
At a Europa Donna conference in Milan, I realised that other European countries are far more sensible than we are. Same goes for the USA, where cancer patients have been incredibly effective in getting the message about breast cancer over to the American public. They don’t employ consultants to undertake training for advocacy – they use cancer patients who train fellow patients, nurses, doctors, etc. Having just finished a year of ‘volunteering’ and training courses, I have discovered that even though the NHS is getting rid of consultants, they have found a comfortable niche with some charities, and have the cheek to attempt to train us.
Surely British charities should look around at their volunteers, and pay them, instead of employing consultants? Volunteers are the people who know what is needed, and many are very effective campaigners: they are involved – they know what cancer is, and what is wanted. Most of us have learnt to be articulate whilst fighting for treatment, and are much more effective than a consultant whose basic knowledge is based on theory, not practice.
I give warning that the next day course I attend run by a charity who has employed an outside Consultancy team, hired at vast expense, who use ‘training by rote’ and copy trendy ideas for ‘getting your audience involved’ is going to be in the epicentre of an erruption – caused by me. I am not putting up with another a training day that started by asking a roomful of dedicated, knowledgeable campaigners who meet frequently on committees, to “stand up and tell us what you would put in your suitcase”. This nonsense is liable to have a controlled explosion on its hands. Me!
This is one of a raft of tricks used by consultant trainers to get everyone talking!! Any cancer patient would know we don’t need excuses to talk! If we have given up a day to help, we want to get on – not waste time.
But I shall be at the Westminster Fly-In – because the time we spend on this campaign is effective, and a good stepping stone to getting better care and improvement in cancer services. Fellow campaigners have got their MPs involved and working for the cause – because MPs don’t need trendy-speak – they want solid facts.
Two years ago I was involved with another charity at the start of the National Cancer Survivorship Initiative (NCSI). 24 months later, it is still in the jaw-jaw doldrums. As it is funded by the NHS there isn’t any urgency, except amongst survivors who are fed up with poor care, and if they can afford it go off to European medical spas. The NCSI doesn’t have to report until 2012! but I can’t wait that long to find out what I should be doing to survive after-effects of cancer drugs.
For report on last year’s Westminster Fly-in, and to get involved, see : http://after-cancer.com/cancer-news-latest/how-to-lobby-an-mp/
Survivorship – will help improve out statistics
It is no good a doctor telling us at a Macmillan conference, “ten years after diagnosis 60% of patients are still suffering from side effects of cancer drugs”, if we don’t get help now.
Helping us stay on hormonal drugs (as they do in Europe) will raise survival rates, and improve our quality of life – rather than knowing we come off the hormonal drugs course because of side effects, but doing nothing to help us stay on.
I want to leave off being a statistic, and get my after-side-effects under control. If anyone feels they can’t wait either, do post a comment below.
For more information on recent Cancer Stats see article from BMJ: http://www.bbc.co.uk/news/health-10944826
However, remember what Dilnot says and take the statistical table shown in this article with a pinch of salt. I have been in Romanian hospitals, and have great admiration for their doctors and their training. However, the country is poor, and I would question that their survival rate would be what is reported – UNLESS – as they can’t afford expensive drugs, would we be better off ditching drugs for our treatment? Makes you wonder.