For once, Chinese Whispers have proved correct. For some time rumour have been saying that as a cancer patient, if you suffer from horrid side effects, this proves the drugs are working.
Patrick Swayze has called side effects “hell on wheels”, but a recent report says it is even more important that patients are encouraged to stay on the drugs. But nowhere does the report say what doctors should do to advise patients who have these side effects.
As a cancer patient, I would like them to stop saying “we can't possibly recommend commercial products” that might help mitigate side effects, and look over the Channel. Europeans, especially the French, have a far better survival rate because their doctors and nurses will talk about products that have been clinically trialled - and help patients mitigate side effects.
Cancer Research UK, in its Science Update, confirms “there is no such thing as a cancer drug without side effects - at least, not a drug that actually works. If a treatment has an effect on a biological process that has gone awry, then it will also affect healthy cells in the body, causing side effects”.
Of course, there is no honour and glory in finding something that works to relieve skin lesions - but there is in producing the drug that causes these.
The ATAC trials compared two well-used treatments, Tamoxifen with anastrozole, and found that women with hot flushes were 16 per cent less likely to have a recurrence (of cancer). Those with joint pain were 40 per cent less likely to have the cancer return, while the lowest rates of recurrence were seen in women with both side effects.
So every time we patients are sick, break out in skin lesions, have a scalding hot flush - the scientists say we should shout Hurray! Next time I have to go in between two cars to try and be gut wrenchingly sick discreetly in the street, because my drug causes this to happen with no warning, I should leap out from the gutter and tell startled passers-by how happy I am?
The report then goes on to say women who experience side effects should be encouraged to stick with the treatment, rather than stopping medication. But absolutely no mention of how we are going to be encouraged to do this - no mention that in France, Germany, USA etc. there are products that help with many side effects. But the companies that make these products consider those countries' clinical trials sufficient, and don't see why NICE, in its bumbling way, requires them to pay for yet more trials just for the UK? So British patients are told by sanctimonious medics “I can't recommend commercial products” - even though these might help.
Whilst other countries have a far better survival rate than we do, the website After Cancer, has been set up to tell UK patients just what products are available abroad, which they can buy in Britain without waiting for NICE's approval.
And for the lucky ones with no side effects? In the ATAC trials less than half the patients had hot flushes on either drug, while between 20 and 30 per cent had joint pain. But both drugs are highly effective in the majority of patients - the cancer came back in only 12 per cent of women on anastrozole, and 16 per cent on Tamoxifen.
So this tells us that if you don't have side effects from treatment, your chances of avoiding recurrence are very good. But if you do have them, your chances are even better. The report's conclusion is that the probable reason why we have side effects is down to genetic differences.
The sting in the tail comes with the conclusion: “side effects experienced by the women were relatively mild, if somewhat unpleasant”. So how come these women on the trials didn't have the horrendous side effects, highlighted in last year's survey by Worthing NHS trust? This concluded over 50% of patients come off these drugs. The British aren't wimps, but it is time that these scientists realised what some patients have to put up with.
Somehow, the story comes to mind when Queen Victoria's doctors tried to tell her she didn't need pain relief during childbirth, as it was traditional for women to suffer. "We are having the baby” was the reply, and the doctors gave in. Cancer patients need a similar advocate.
When Kylie Minogue got breast cancer at a relatively early age, the publicity did a tremendous amount of good for young women, who were being turned away by their doctors as “you're too young to have breast cancer”.
Now Patrick Swayze has called side effects “hell on wheels”. So whilst one doesn't wish more suffering on him, his comment might just make doctors and scientists sit up and do something to help.
