I've learned many things on my cancer journey and there's a lot that I feel strongly about. If, 10 years ago, I'd known what I know now, my current prospects might have been very different - so please allow me to share some of the things I've learned along the way...
Prostate cancer is the most common cancer in men and 30 of us die from the disease every day in the UK. Yet it remains shrouded in secrecy and the sad fact is that most of us are either dying of ignorance or embarrassment.
If more of the facts were in the public domain, if prostate cancer were discussed as much as women's cancers, if doctors and health workers knew more about it, and if there were a national screening program like those for breast, cervical and bowel cancers, then more cancers would be detected earlier and less men would die.
LESSON 1: PROSTATE CANCER NEEDS TO BE PUBLICISED AS MUCH AS WOMEN'S CANCERS
The prostate is a sexual organ, like a breast or a cervix. But unlike breasts and cervixes, most people remain too embarrassed to talk about it - maybe because it's tied up with semen and ejaculation, subjects which remain taboo, even in today's enlightened society. So let's get the facts straight once and for all - all men produce semen, all men ejaculate and all men masturbate. As a famous British lieutenant made clear, 'there are just two sorts of people in this world: wankers and liars!'
Men need to know that all urinary and sexual changes should be checked out by their doctors straight away. They will probably be aware of prostate cancer's urinary symptoms but may not be familiar with all the sexual ones, so patients must be bold and insist that they get properly checked out. Early detection of cancer is essential and any delay will reduce the chances of a cure. However, all the symptoms can have other causes and only a thorough medical examination and tests can determine what causes a particular problem.
Unfortunately prostate cancer is often 'silent', with no symptoms for months or even years, but there's a number of mainly urinary and sexual symptoms which should be checked out by a doctor without delay.
If you look at the sexual symptoms, it should be obvious that they are more likely to be noticed during masturbation than intercourse. I've discovered many other men who have also experienced these symptoms, but I've been greeted with denial by some of the more old-fashioned nurses in the cancer charities. So I suspect that it's mainly embarrassment that has delayed further research into this unsurprising side of the disease.
LESSON 2: PROSTATE CANCER HAS SEXUAL AS WELL AS URINARY SYMPTOMS
Your doctor should perform a risk-based assessment of your symptoms, including a PSA blood test, a DRE (a digital rectum examination, which involves feeling your prostate with a finger up your bottom) and checking your genetic make-up and any history of cancer in your family. If there are any concerns, you will be referred to a urology consultant who is likely to request a prostate biopsy. Accepted good practice says that this should happen within 2 weeks of the initial visit to your doctor, whereas many men are made to wait much longer than this - I was kept waiting 17 weeks before being given my 'locally-advanced' diagnosis in 2004!
LESSON 3: REFERRAL TO A UROLOGY CONSULTANT SHOULD HAPPEN WITHIN 2 WEEKS
Unfortunately it is not uncommon for prostate cancer to be advanced by the time a patient notices any symptoms, which is why it's imperative that a national screening program be introduced for all men without delay. A single PSA test is not, in itself, a good indicator of prostate cancer since, for example, some men with advanced cancer have low PSAs. Far more significant is the rate at which PSA rises over a period of time, something that can only be judged by having regular, annual tests.
There's a possibility that a simple MSMB urine-test will soon give an earlier indication of prostate cancer and, if so, screening will become simpler, cheaper and more reliable than the PSA test. But, in the meantime, we must continue to make do with PSA.
Risk-based screening also involves a DRE and looks at genetic markers and family history before deciding whether to refer a patient to a consultant. Various risk-based calculators have been proposed or are already in use in different parts of the World and the consequence of such an approach is that fewer men need to be referred for biopsies, saving the health service time and money and the patient unnecessary worry and pain.
It should be noted that private health-care providers already do things this way because it saves them money. More accurate screening results in fewer biopsies and earlier detection results in easier, cheaper and more effective cures.
30 years ago, women's cancers weren't discussed as openly as they are today and today's routine screening for breast and cervical cancers were only just beginning. Isn't it time that men were treated equally? Perhaps a case could be brought against the UK Government under its own Sex Discrimination Act.
LESSON 4: NATIONAL RISK-BASED SCREENING PROGRAMS SHOULD BE INTRODUCED WITHOUT DELAY
Recent research suggests that an MRI scan should be performed before deciding whether a biopsy is necessary and, if so, a template-mapping procedure should then be performed under general anaesthetic. The scan would eliminate a good number of false alarms, saving a number of patients the need to undergo unnecessary treatment, and template-mapping misses fewer cancers which should be treated.
LESSON 5: BETTER DIAGNOSTIC PROCEDURES SHOULD BE INTRODUCED WITHOUT DELAY
Patients who, after screening, are given the bad news that they have prostate cancer, need to be given as much information about their condition as possible. A booklet like the Dorset, Hampshire and Sussex Prostate Cancer Support Organisation's 'Prostate Cancer - Knowledge Empowers' should be given to every patient at this stage.
Unfortunately neither this booklet nor any other similar ones that I've read (and I've read most, if not all, of them) tell the whole story. In particular, patients should be told what new symptoms they should be on the lookout for, symptoms that could mean that their cancer has progressed further and urgent action is needed.
One such group of symptoms are those associated with metastatic spinal cord compression (MSCC) and include pain, numbness or pins and needles in the back, legs, buttocks, chest, tummy or arms, and problems going to the toilet. If any of these symptoms are noticed, medical help should be sought immediately and, if MSCC is diagnosed, treatment should start within 24 hours. Yet, crucial as these symptoms are, no general booklet that I've read even mentions them, and many doctors and health workers are ignorant of the fact that urgent treatment is necessary. Prostate Cancer UK's MSCC fact sheet makes everything very clear, but it's too late to discover it once this stage has been reached - warnings about the symptoms need to be issued at the earliest opportunity, once the initial prostate cancer diagnosis has been made.
And, of course, there are several other symptoms that a prostate cancer sufferer needs to be on the lookout for.
LESSON 6: CLEARER, CONCISE FACTS NEED TO BE GIVEN TO ALL PATIENTS UPON DIAGNOSIS
I'm not an unintelligent person and believe I've always been as aware of the commonly-discussed health issues as anyone else in the UK. I went to my doctor as soon as I had urinary symptoms in 2004 and, after a long wait, was diagnosed with locally-advanced prostate cancer which could be controlled but not cured. If I'd known that the sexual changes I noticed 2 years earlier were a cause for concern, then my cancer might have been discovered in time for a cure - but I simply assumed they were symptoms of aging and, without the knowledge that I now have, was far too embarrassed to discuss them with anyone. Thus it is that I might now claim to be dying of ignorance, embarrassment or both!
My treatment started 22 weeks after the initial visit to my doctor. That was the longest, scariest wait I have ever had to endure, during which time my condition could only have been getting worse. A friend with the same condition, but with a private health plan, started his treatment after just one week - private treatment under a part-time NHS consultant in an NHS hospital paid for out of the taxes I pay - surely that isn't right!
I now have MSCC, diagnosed at a regular checkup 4 months after I first noticed back pains. So much for starting urgent treatment within 24 hours! Again, and despite having consumed volumes of information about prostate cancer over the previous 6 years, I remained ignorant of the very symptoms I should have been looking out for - further proof that something is wrong and that I'm dying of ignorance.
And the stupid thing is that I'm not an ignorant sort of person and nor are the health workers who were also unaware of the seriousness of my MSCC symptoms. The UK's National Health Service is, without doubt, a very wonderful organisation and the treatment I eventually received has been second-to-none. But surely something is wrong with the information that both it, and the cancer charities, disseminate if so many people are dangerously ignorant of facts that can save lives, pain, worry, time and money, by not addressing some of the most important facts concerning this, the most common of men's cancers.
LESSON 7: THE NHS AND CANCER CHARITIES SHOULD PUBLISH THE FACTS MORE CLEARLY
At a time when most people exchange information at the click of a mouse button, why is it that NHS medical notes aren't kept in a central database which can be accessed by everyone who needs to see them, anywhere in the UK? Consultants currently keep hand-written notes that aren't shared with other health workers, urgent appointments are requested on hand-written memos and sent in the post, scan results are shared on the telephone during working hours only, information needed for appointments isn't delivered on time - and the list goes on. If I'd run my own small-business so inefficiently, I'm certain it would have folded years ago. The medical side of the NHS is absolutely wonderful but, in my humble opinion, its management and administration leave a lot to be desired.
LESSON 8: NHS ADMINISTRATION NEEDS TO BE BROUGHT INTO THE 21ST CENTURY
Patients undergoing chemotherapy should monitor their temperature and seek medical help immediately it rises above 37.5 C. But my brand-new Boots digital thermometer was faulty and indicated 'normal' when my temperature was really 38.0 and I had an infection which required hospitalisation. It gave me false reassurance and caused me to delay seeking the urgent help that I needed for 2 days.
When I returned from hospital, I checked it against a mercury thermometer by placing both of them under my tongue at the same time - the Boots one under-read by 0.6 C. I subsequently returned it to Boots and reported the situation to Trading Standards.
Unbelievably, Boots destroyed my faulty thermometer without examining it and, despite having been given several opportunities to do so, haven't apologised for selling it to me in the first place. They market clinical thermometers which are intended to monitor personal health and the detection of illness, and which are supposed to be tested and calibrated to within 0.1 C. But they sold me one that was dangerously inaccurate. And since they've admitted to me that they only test one or two in each batch, it goes without saying that some of the other ones that they sell are also dangerously unfit for purpose. In my book, that's criminal.
LESSON 9: DON'T BUY ANYTHING FROM BOOTS THE CHEMISTS
Trading Standards passed my complaint to the national Medicines And Healthcare Products Regulatory Agency (MHRA). They said they'd investigate the matter but did nothing for 4 months, by which time they'd left it too late. They'd let Boots off the hook and failed in their responsibility to protect public health.
Medical standards and the regulatory authority exist to ensure that medical equipment is fit for purpose and that someone takes responsibility if it fails in any way. Clearly the MHRA doesn't take this job seriously - and an internet search will show you that this wasn't an isolated incident.
LESSON 10: THE MHRA REGULATORY AGENCY IS INEFFECTIVE AND A WASTE OF TAXPAYERS' MONEY
© Chris Bell