Tuesday, 12 June 2012

Stats, Tears and No Context from the BBC

With the Leveson Enquiry looking at responsibility of the media and how this has been neglected, one would think that those who bring us the news would be taking it a bit more seriously than usual. Yet, this morning, BBC Look North made me angry. Very angry.

Claire Frisby read from her autocue that St James' Hospital researchers had been looking into recurrence rates for Macmillan. The video report then told us, with absolutely no context or qualification that ONE IN FIVE women with breast cancer will have a recurrence and of those, only FIVE PERCENT will live for ten years.

This was some of the most irresponsible, breathtakingly thoughtless, lazy reporting that I have ever seen regarding cancer.

The study showed that of 1,000 women who were first diagnosed with the disease between January 1999 and March 2002 22.6% suffered a recurrence. These are the actual study statistics:

  • 1,000 patients were studied, all were diagnosed between 1999 and 2002 in Leeds.
  • 54 patients could not be followed up. 
  • 214 of the remainder (22.6%) suffered a recurrence of their breast cancer.
  • All 214 were free of the disease for an average of 39.9 months before it came back, and they survived for an average of 17.9 months after being diagnosed for a second time.
  • 51% of the women had lived disease-free for at least three years.
  • 5% of the 214 women survived for 10 years.
Such blanket reporting of crude data statistics gives a cruel, dark snapshot of just a small part of the story. 

  • What was the age range of the women, the mean age? How many of them would have lived ten years or more anyway?
  • What type of breast cancer did they have - ER+, HER2, etc?
  • What grades were the cancers?
  • Where were the recurrences located - local, regional or distant?
All of these elements have an ENORMOUS impact on treatability and survivability of breast cancer.

These are statistics for women who were diagnosed ten years ago, when treatments were very different to today.

For the BBC to tell women, that if they have a recurrence, that they have only a 5% chance of survival, probably had many breast cancer patients in tears over their cornflakes today; it certainly did me.

The BBC ignored the fact that Cancer Research UK has warned that the figures in this study are "crude and unhelpful" and has said that they should not be taken as an accurate figure for breast cancer sufferers across the UK as a whole.

Prof Peter Johnson said: "The chance of cancer coming back for any particular woman is influenced by several factors such as whether they have passed the menopause, the size and grade of the tumour, whether it has spread to lymph nodes and whether it has hormone receptors, so crude figures for large numbers are not helpful to individual women. In fact, for many women the chance of cancer coming back is much lower than one in five."

Another cancer charity, Breakthrough Breast Cancer, said the study was "a useful first step towards knowing how many breast cancer patients might experience a recurrence of their disease. But Dr Rachel Greig said that further studies from other parts of the UK were needed "before we can accurately say what the true rate of breast cancer recurrence is nationally."

The important issue is that treatments today are much better at treating and managing breast cancer, whether primary, recurrent or metastatic.

When I was worrying about survival statistics, after my recurrence was diagnosed, I found this and screen captured it - unfortunately I cannot remember the wise website that featured it, but I read it every time I come across a frightening statistic. 
Statistics Do Not Tell the Whole Story

If you talk to your doctor or do your own research about metastatic breast cancer, you will probably hear or read different statistics that talk about survival rates and mortality (death) rates.

Reading or hearing information like this can be discouraging and even frightening. Remember that you are not a number or statistic, and what happens to you in the course of your breast cancer journey is not dictated by statistics.

There are many reasons why the statistics you read are not accurate predictors for you. For one, some of the numbers are based on older treatments that may not have worked as well.

More importantly, metastatic breast cancer is characterized by wide variability of survival, and so averages mean less. You may well be one of the outlivers who do well for extended periods of time.

While your medical providers may give you some statistical information regarding your particular type of breast cancer and survival, no one can determine with absolute certainty how you will respond to treatment or how your cancer will progress.

Don’t give up, and don’t let a statistic you find in the course of doing research or talking to your doctors rob you of hope.
Hope is so important and positivity vital. Today, many women fighting this dreadful disease, will have had that shaken by the BBC.

Thanks to The Guardian for quotes.

UPDATE: 13 June 2012

I received a message from Tim Smith, Editor of BBC Look North this morning, with a link so that I could watch the evening edition of the programme from yesterday.

I am delighted to include this update to say that the reporting of this news story in the evening bulletin was absolutely spot on.  The statistics were reported with context and the points I mentioned above, regarding the issues that affect survival and newer treatments being more affective were all included in the report.

Much better! I also have to give credit to Christa Ackroyd for her sensitive approach and empathy when presenting this story and the interviews that were included.

1 comment:

  1. I totally agree with you. I heard the report this morning and it gave the impression that all women who get a recurrence have only a 5% chance of living to ten years. Statistics are dangerous, they can make a patient have the motivation to fight or they can also make them think there is no point in trying. This was very poor reporting by Look North.