Hi All
The ‘timesonline’ website (Times and Sunday Times) has what I think is a very interesting article, which has appeared today under their ‘healthnews’ section, entitled
‘The cancer treatment the NHS wants to keep quiet’, if anyone else wants to take a look.
Yes really interesting article…thanks for link.
Jane
Interesting article demonstrating how barmy the system can be.
Jenny
yes it was an interesting article -made me wonder are there similar things out there for breast cancer.? A friend of ours had this cancer and its really quick and awful, so this doctor is doing quite well at this stage…
thanks for drawing our attention to this article it just goes to show what a mess the nhs is in and how much better we would all be if they were able to think and act outside the box.
Please check out secondaries forum “Invited to Westminster” all opinions and experiences very very welcome.
Love Debsxxx
Yes, it made me wonder, too…how much does ego, dogma, inflexibility and blinkered thinking affect what happens to us?
S
Reading the article more thoroughly now I think there are so many different kinds of issues involved.
Perhaps first and foremost is the issue of why the NHS can’t think outside the box and fund patients to go on trials internationally…particularly when the only costs would be fligths and accommodation…this trial in the USA is free. I read somewhere recently that many trials both in the USA, here and more widely, particularly on treatments for advanced cancer often have huge recruitmeent problems…and the more strategies which can be found to fill up the places on trials…for people who want to go that route…then the better.
We have no way of knowing though whether the tretament that Dr Lawson went to the Staes for is going to have any impact whatsoever on his prognosis. The vast majority of Phase 1 trials end up going precisely nowhere. So this raises the issue of how much each of us wants a chance on a gamble…some do…but maybe some don’t. I reckon I’m one of the latter probably…pretty cynical about any current cancer treatments or anything in the pipeline (though I think that yes incremetal improvements in treatment have been made in last 20 years…but no big breakthroughs anywhere on the horizon.). Maybe I have to get iller before I feel desperate enough either to consider mortgaging my house or flying round the world in search of treatment…but right now I kind of feel philosphical about what will be…will be…and just somewaht gratefiul for being a ‘lucky bastard’…or rather luckier than some…as Dr Lawson hopes too that he will be.
Rambling thoughts really.
Jane
There are lots of trials in the US, it is true, but it is unclear which ones will end up panning out.
I think that the bigger issue is that in general it is hard for cancer patients to find out their options, and not just overseas options. From what I have seen, the easiest website to use for finding about trials in the UK is the US government’s clinicaltrials.gov site, which isn’t the most obvious place for a British patient to look. I once found someone in this country exactly the trial she was searching for for her sister and her sister even got on the trial she wanted, but I was appalled that her sister’s doctor had not done this for her. Efficient recruitment into trials helps patients who have run out of options, but it also helps to speed up progress generally.
In the US there is actually a programme that trains volunteers to help cancer patients find and evaluate trials. Dr Lawson is lucky in that he has the necessary background to help him pick one that has a better chance of working, but what does the average British cancer patient have? Unless a trial is run at the very hospital you are being treated, you are unlikely to hear about it from your doctor.
The truth of the matter is that clinical trial recruitment is difficult. In the US, part of the problem is that private insurers are anxious about patients they cover participating in trials, so the UK is not unique in having problems, but the US does seem to be about making patients aware of what trials are available domestically.
This doctor is doing really well over 12 months down the line.My Father died from Mesothelioma 11 years ago.He became ill,was diagnosed and died within 4 months.It is the most aggressive cancer there is.When my Father had it there was no treatment for it so this guy is very lucky.
Alli.
I find it odd that it is hard to find candidates for clinical trials. When I attended the secondaries event in Westminster last autumn, many of us expressed an interest in finding out more about what trials may be available.
A bit irrelevant but, I think Stephen Gould had mesothelioma (author of ‘The Median is not the Message’) and died of an unrelated cancer many years after his initial diagnosis.
Jenny
more on Stephen J Gould and his survival of mesothelioma
The problem may be briefly stated: What does “median mortality of eight months” signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as “I will probably be dead in eight months”—the very conclusion that must be avoided, since it isn’t so, and since attitude matters so much.
I was not, of course, overjoyed, but I didn’t read the statement in this vernacular way either. My technical training enjoined a different perspective on “eight months median mortality.” The point is a subtle one, but profound—for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.
We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous “beginning of life” or “definition of death,” although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard “realities,” and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the “I will probably be dead in eight months”may pass as a reasonable interpretation.
But all evolutionary biologists know that variation itself is nature’s only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently - and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.
When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.
Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call “right skewed.” (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out - left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn’t much room for the distribution’s lower (or left) half—it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran - for I had already concluded that my favorable profile made me a good candidate for that part of the curve.
The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn’t be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances - substantial time. I didn’t have to stop and immediately follow Isaiah’s injunction to Hezekiah—set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.
One final point about statistical distributions. They apply only to a prescribed set of circumstances - in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.
It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die—and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light.
Alli,
There is still no treatment in the UK for mesothelioma. I have been to the funeral today of someone who was dx with it 16 months ago, much the same time as me with my BC. It really made me think about the fact that I was there, very much alive, and hoping to stay that way for a long time to come. He always knew there was no hope for him.
Your right roadrunner, my best friends hubby just been Dx with it. Has had his lung drained and biopsies taken and results next Mon to see if they can offer any treatment but its not curable obviously.
Think i will re-read your post in the morning Mole takes some reading.
Rx