Wednesday 25 April 2012

George - One Year On

Loss. Such a small word to describe such a vast depth of sadness and heartache, but it's the word that best describes what we feel. It's so hard to believe that it is one year to the day that Georgie died. One year. We function now. We go to work, to school, engage with the world. But that sense of loss is with us always; an invisible cloak of sorrow that cannot be shed.

In that year we've made small steps to honour George's memory - such as setting up the TP53 Trust in his name - and have come to know other families with similar horrific histories. With time we hope we can make more progress, to make a real difference in the fight against this evil disease. It won't bring George back - the world will never regain its shape - but if we can help others to avoid the same loss, then perhaps it will make our loss easier to bear. George would have approved.

Thursday 19 April 2012

Is Mammography Screening Always A Good Idea?

I had, like most people, always assumed that mammography screening was a thoroughly good thing. If there was a controversy about, I had assumed it would be one that would come down to costs versus benefits. The assumption being that the only thing stopping mammography screening being rolled out to younger women was just about money. At no point had it ever occured to me that there might be scientific controversies associated with screening. That was until I found out about Peter Gotzsche and his argument that mammography screening was actively harming women. My first thought was that this must be about sloppy diagnosis - if women were being harmed it was because some of them are being misdiagnosed and then subjected to the array of harsh treatments - chemotherapy, radiotherapy and radical surgery. But no, his point is more subtle than that and comes down to basic oncology. His key finding, based on the data from randomised clinical trials, is that women are being over-diagnosed. And it wasn't until I read his book, Mammography Screening: Truth, Lies and Controversy (which I have reviewed here:, that I got the point.

In effect it boils down to a simple fact - not all breast cancers will grow, spread and ultimately kill the women who develop them. There are cancers that are slow-growing or which sprout, shrivel and die and which actually do not cause any health problems whatsoever. Many women will develop these types of tumours and never even know it. The problem is that we don't have any clear way of differentiating between these tumours and the ones that turn into killers. What screening does then is pick out all tumours - the safe and the dangerous. And because we don't know which is which doctors have no choice but to treat them all. It's not that women are being misdiagnosed, the tumours that are picked out are real, it's that some of those tumours are less dangerous than the treatments that follow.

Wednesday 18 April 2012

Introduction to LFS - Leaflet

One of the things that sufferers of Li Fraumeni Syndrome have to deal with is the complete lack of knowledge of the condition amongst most people. This is especially irritating when it includes doctors, nurses, health visitors and so on, as well as teachers, health visitors and so on. It takes time and energy to keep having to explain what TP53 is and how it can cause LFS and so on. As one way of short cutting all of this the George Pantziarka TP53 Trust has just published an introductory leaflet that can be downloaded, printed off and passed around to those people who want to know more or who need to understand what it means for sufferers.

The PDF can be downloaded directly from the site here:

Thursday 12 April 2012

Standards in Cancer Research

As regular readers of this blog will know, I believe that the relative lack of clinical success arising from cancer research is a major issue that demands attention from patients, patient advocates and the research community alike. In a recent post I pointed out that:

The truth is that there is an awful lot of money invested in cancer research - there are billions of dollars of funding from governments, private foundations, the drugs industry and members of the public donating to the cancer research charities. If it was just a matter of money the fight would have been won by now – or at least be further along than we currently are.

If it's not just a question of funding, then how can we explain why new treatments are so slow in coming? And why are the new treatments that do appear so often disappointing?

Interestingly enough a new article in the journal Nature (considered one of the world's leading scientific journals), casts an eye over the cancer research landscape and comes up with some depressing findings. What the authors find is that much pre-clinical research (i.e. research aimed at therapeutic outcomes rather than theoretical understanding) is pretty much a waste of time. While the papers may generate other papers and research (and gain the authors much prestige and funding), when it comes to reproducing the results in other laboratories or by other researchers there is nothing there. In fact a drug company, Amgen, attempted to reproduce the results from a number of 'landmark' cancer research papers and only manage to succeed in 11% of them.

Why is this? One of the reasons they highlight is similar to the one I have also discussed:

They include the use of small numbers of poorly characterized tumour cell lines that inadequately recapitulate human disease, an inability to capture the human tumour environment, a poor appreciation of pharmacokinetics and pharmacodynamics, and the use of problematic endpoints and testing strategies.

And, also echoing a point I have made previously on this blog:

What reasons underlie the publication of erroneous, selective or irreproducible data? The academic system and peer-review process tolerates and perhaps even inadvertently encourages such conduct. To obtain funding, a job, promotion or tenure, researchers need a strong publication record, often including a first-authored high-impact publication.

If this isn't a major scandal than what is? There are many anti-cancer activists now campaigning on trivia like plain packaging for tobacco when the real campaign needs to be focused on things like this. We should be demanding more from researchers, from academia and from the medical profession - not arguing over what colour wrapping we should have on cigarettes.

I'll leave the final words to C. Glenn Begley and Lee M. Ellis, authors of the article in Nature:

We in the field must remain focused on the purpose of cancer research: to improve the lives of patients. Success in our own careers should be a consequence of outstanding research that has an impact on patients.

Cancer researchers are funded by community taxes and by the hard work and philanthropic donations of advocates. More importantly, patients rely on us to embrace innovation, make advances and deliver new therapies that will improve their lives. Although hundreds of thousands of research papers are published annually, too few clinical successes have been produced given the public investment of significant financial resources.