To test or not to test ?

The continuing saga.

Occasionally  we feature the problems associated with PSA testing (and the follow up procedures) which may result in a positive result but in so many cases produce an inconclusive one which leaves the patient in a limbo with ongoing six monthly checks stretching out into the future like some medical milestones marking off the later stages of his life.

Whilst many patient groups and medics are keen on PSA tests and the follow up tests which transpire, there are also many medics who are not. They are fully aware of the trauma which continual testing can produce as well as the debate about the rights and wrongs about early treatment.

I am not reproducing the news item detail below to frighten you or to expect you to change your mind.  It is just important to be fully aware of the potential side effects so that you can honestly weigh up the pro’s and con’s for yourself. In this context note the comment that “if the risk is smaller than one death in 100 patients they are advised not to risk scaring the patient.”  Now I would prefer to be informed, scared even, as I need all the relevant information before I submit to any type of testing !

A clipping from The Oswestry and Border Counties Advertiser.

An inquest into the death of Mr P, 59 who died from E-coli Septicaemia just one day after a routine biopsy of the prostate. Mr P had been referred to the hospital for a biopsy after tests showed high levels of an enzyme that can indicate the presence of prostate cancer. (PSA test).  The biopsy involved a sample being taken in a short procedure under local anaesthetic, (this doesn’t always apply Ed.) by passing a needle through the rectum into the prostate.  The inquest heard that E-coli is commonly found in the rectum, but that the procedure is followed by three courses of antibiotics to prevent infection. 

A statement from Dr *** who carried out the biopsy confirmed that Mr P was made aware of the risks and was told to contact his GP should he experience any problems after the biopsy.  Dr *** said the biopsy went well and Mr P  was allowed home half an hour later. 

When asked if doctors tell biopsy patients of the small risk of death, Dr *** said that if the risk is smaller than one death in 100 patients they are advised not to risk scaring the patient.  The autopsy showed that death had resulted from E-coli which the biopsy needle had allowed into the blood stream.  Dr *** said in spite of the antibiotics there is still always a risk. 

The coroner recorded a verdict of death by misadventure

Mr P’s wife said that while the inquest had explained how her husband had died, it had not helped her understand why.  “Legally there is nothing else to do now” she said, “but hopefully it will make people more aware of what can happen.” (PD) (Reproduced from an earlier Prostate Focus)

Why is POTENTIAL HELP kept a secret from so many cancer patients ?

Now you may never need the help and advice of a Macmillan nurse, or a palliative care team.  The problem is that if you do; on that very day when you ask; you may find that one is not available.  Then of course it is too late. 

So why not make a move now, just in case ?  Be a boy scout; be prepared !!  Check with your local clinic.  Do they have a contact number or a method of referring a prostate cancer patient onto a Macmillan nurse  or PCT (Palliative care team) ?  If the answer is ‘yes’ excellent, if not then check with your local hospital. Do they ?  Check with the Urology dept at your hospital. 

The problem seems to be a lack of communication.  Macmillan nurses for instance prefer to be with the patient from the first diagnosis of a cancer; (in our case prostate cancer.)  Regrettably, some medics seem to feel that the best time is when a patient is on his last legs !

To make this clear I quote from one PCT brochure.  “The PCT pledge to work closely with doctors and other nurses in this area to meet the needs of people living with a life-threatening disease, helping to achieve the best quality of life for them and their families” 

So both the PCT and the Macmillan nurses are there to help with all aspects of a prostate sufferers condition, to liaise between the patient and the medics, to provide advice, information and support.  Not only to the patient but also the carer, who themselves may be desperately in need of help. Amongst other things they can offer advice on pain relief and treating day to day symptoms, provide information about local support groups, about finances and benefits and explain detail of diagnosis and treatments.

If you find that your area is missing this valuable asset then contact your local Health Authority, for they are the ‘grey’ ministry men/women who make the decision to pay for such a valuable part of the NHS service. They allocate your cash if they feel that the need is there.

Macmillan nurses are specially trained to be there for each individual who has cancer. I repeat, some medics seem to be of the opinion that a Macmillan or PCT nurse should only be brought in at the end, (the end of your life!), but  this is not the way they work.  What I say is that each man who has prostate cancer and his family should be put in touch with a nurse at the time of diagnosis.  That way they can be on hand to assist, to ease the new patient through the new experiences they are about to face. 

They can liaise between medics and patient and vice versa to ensure that there is no friction or lack of knowledge about the current situation or treatment.

They are on hand to bring in any necessary support that may be required to help out with problems that may occur.  In short, they are not a luxury; they are a necessity ! But it may be up to you, to ensure your local health authority has adequate staff.  If you are not succeeding then bring in others from your area.  Write and raise a petition if you have to.

Don’t be deterred by any excuses or “double speak”.  Your local Macmillan nurse has to be funded by your local authority.  If they say they will consider it in the next budget review, say that is no good. They have set aside funds to cover new initiatives, to cover things that have failed to be considered previously.  Tell them to dip into that !  It is true that you may not need to take advantage of the services of these highly trained nurses, but maybe your neighbour or relation will.  Think of the satisfaction you will get when you see the help they are getting when you know that you were instrumental in setting it up in your area.

If you find that your area is fully catered for, don’t despair. I have a task for you too.  Health authorities have Macmillan nurses especially trained to deal with breast cancer for instance.  Have they anyone to deal with prostate cancer?  I think not.  Why not ?  Ask the question.  Find out which button to press and push v-e-r-y  hard.........You can make a difference, but not by thinking about it or writing to me.

You need to phone the Health Authority in your area.  Write a letter.  Don’t just expect an answer, expect a result....... in your (our) favour. And not at some unknown date in the future, but some firm date, like last Monday !.

Why are not enough specialist nurses employed by health authorities. Have some areas none at all ?

Why are there nurses specialising in breast cancer, but none for prostate cancer  ?

Why do the men who write to the PHA feel that there is total lack of counselling or support for men ?

Why is it that some GP’s do not refer their patients?  The problem is that some Macmillan nurses will not take on a patient unless he has been referred.  This can mean a man and his family lack top quality care just when it is needed at a critical period in their lives.

If you have prostate cancer ‘ask’ your GP or hospital for a referral today.

Super, Great, Smashing and other similar words !

If you wish to read all the newspaper comments on the ‘new’ drug, abiraterone,   they are here.

Cancer drug could save the lives of 10,000 a year. The Times, July 22 2008

Prostate cancer drug gives hope to 'untreatable' patients. The Independent, July 22 2008

Drug trial hope for men with prostate cancer. The Guardian, July 22 2008

Drug for deadly prostate cancer. BBC News, July 22 2008

Experts hail new prostate cancer drug. Financial Times, July 22 2008

The prostate cancer 'wonder pill' set to save thousands every year. Daily Mail, July 22 2008

Daily pill beats prostate cancer. Daily Mirror, July 22 2008

Prostate cancer drug 'breakthrough'. Daily Express, July 22 2008

New prostate cancer drug effective in 80 per cent of men, study suggests. The Daily Telegraph, July 22 2008

The problem with Newspapers is that they go for the ‘Super, Great, Smashing’ headlines and verbage, always have and I guess always will.  Over the last fifteen years or so there have been many similar stories of treatments which would, it was claimed, save the lives of thousands. But of course unwritten was the qualification that they would, in five years time, if all the trials panned out. The problem was that by the time the five years deadline had arrived the trials had failed and the treatment/cure was binned.

Let us hope that this new drug, abiraterone  will do what it says, although it would be nice to think that it would cure, not just alleviate the problem in some patients.  Any treatment which is not going to set the patient back to the way he was before he was diagnosed cannot, in my mind be called a ‘wonder pill’.  It should also be pointed out that the drug is not going to ‘save the lives’ of 10,000 of men per year, but it would appear, that it may extend some patients lives.

There is no doubt that it is still far too early to get excited.  Of course a great deal depends upon your current state of health, if you are well with, say just a touch of bph then it is of interest.  If you are in pain with in the late stages of PC then it is a different ball game.

So what of the 21 men who took part in the trial. Some positive outcomes for some of the patients were that five of the eight patients who had measurable disease at the beginning of the study, some partial response was evident (i.e. the tumour shrank).

There was also evidence of regression of some of the cancers that had spread in two patients and a reduction in bone disease (metastases) on CT scan in two others.

In 11 patients who had pain and required analgaesics at the start of the study, eight improved to a degree that allowed them to reduce their dose or stop taking analgaesics altogether.

So certainly some positives are there but if I was a journalist I certainly could not have written some of the articles which have been printed this week.

So to have a more measured response - what does the NHS Knowledge Service have to say about the study?

“This early study shows promising results in a small group of men with advanced prostate cancer who have few other treatment alternatives. It is a phase I study, and provides early evidence of the safety and tolerability of Abiraterone.

However, the results are preliminary, particularly those for efficacy, and no survival advantage has been demonstrated in this trial. The study only included 21 men, and it did not compare the treatment with any other options in these participants. The larger study that follows this one will provide more information about the applicability of the treatment to a wider group of people.

Tumour responses here, although significant, occurred in a small number of men. If the results are repeated in larger studies, this drug could be a potentially effective treatment for men with untreatable prostate cancer.”

Hardly had the print been saved to my file when I came across an article by Richard Smith in the Guardian.  He is less reticent about his feelings.

Appalling Hype of a Drug for Prostate Cancer.

Richard makes many good points which have been overlooked by the general press.

First of all the results are from a very small trial. And this a trial merely to check to see if the drug has any side effects which would preclude it from any futher use.  So at the end of the trial five patients are still, apparently, being treated with abiraterone. Whilst five are using the drug plus a strong steroid. This means nine have stopped the treatment for some reason.

Richard suggest they have died but it is also possible that they suffered from some side effect which was not compatable with continued use.

It is the next trial the larger, controlled, randomised trial that will determine whether a drug is effective and can be prescribed to the general public.  Bearing in mind that the initial trial began back in December 2005 it is perhaps a little hopeful of the researchers to say that they expect the drug to be available within three years.

So let us keep our fingers crossed that the drug will have some action against prostate cancer. Perhaps it is expecting too much for it to SAVE 10,000 lives a year. To read all of Richard Smiths article, well worth a read, check out this web site.

http://www.guardian.co.uk/commentisfree/2008/jul/23/cancer.health