December 2, 2000
PROSTATECANCER.COM
by Terry Herbert
|
| |
When Terry Herbert was diagnosed with prostate cancer at the age of 54, he thought he'd been given a death sentence. However, after trawling the web, he discovered it's not nearly as serious as he thought. Here he offers a guide to the 5,000 or so sites that deal with the subject.
Does everyone with a potentially fatal disease benefit from gaining knowledge about the disease? Although that is debated in medical circles, there is no doubt about the answer for me, at least. It is an emphatic YES! And the best--and easiest--place to obtain the information is the Internet.
On August 17, 1996 the urologist told me and my wife that I had Prostate Cancer. No punches pulled, that was it. The majority of people regard a cancer diagnosis as a death sentence and we were no different. He didn't seem to care about the impact this made on us. Sitting there like stunned mullet, we vaguely heard him say that he could operate and deal with the problem.
On a tide of near panic, I went for the additional (and unnecessary) tests he had called for while frantically trying to come to grips with our changed situation. I was 54 years of age. We had recently returned to South Africa, buying a run down house in a magnificent situation. Renovations were about to start. Should we go ahead with those? And what of my consultancy work in Australia? I was due to meet my clients there in three weeks. Should I go ahead with the meeting? We had no medical insurance. What would this all cost? Did it matter if I was going to die anyway? The life insurance would pick up the medical bills. What should we tell our son in Melbourne?
The test results were negative which meant, the urologist told us, that he could go ahead with the surgery. He suggested this be scheduled for a date as soon as possible after my return from Australia. By now the mind-numbing fear was receding. An old friend, who had retired from his paediatric practice, made enquiries for us. He told us there was no need to rush into treatment, that we should research the options before making a final decision. The relief was palpable and we started gathering all the data we could.
The Australian trip gave me a good deal of time to study the articles, magazines and books we had collected. I returned with an understanding of some of the issues facing us and a desire to learn more about them. The Internet seemed to be the place to start, but like so many men of my age and older, I was wary of the technology despite having used a personal computer for some years. I need not have been concerned. An hour or so with the young son of a friend and I was capable of navigating my way across the oceans of learning.
The volume of information was daunting initially. I found almost 1,000 sites dealing with some aspect of the disease. There are now well over 5,000. Realising that a methodical approach was the only way to mine this mountain of knowledge, I developed a routine. Each morning at about five thirty I would log on. That was when response time was best. I would spend an hour seeking useful sites, printing any material I wanted to study. This would be left for my wife to read while I took the dogs for their daily walk on the mountains behind the house. A quick swim in the sea, and I would be ready for breakfast and a discussion on the day's discoveries.
Looking back at those printouts I realise how fortunate I was in finding Steve Dunn's site http://cancerguide.org/ early on. He is [renal cell carcinoma] survivor and his site has some basic, sound, solid advice on the pros and cons of research on the Internet. More importantly for me, he also had an excellent piece by Stephen Jay Gould entitled 'The Median Isn't The Message'. For the majority of people who are not as numerate as they might be, this sets out simply how to approach the statistics that are a feature of so many sites.
We began to understand more clearly that, whilst the disease might well be fatal, the chances were good that it would not be for me. Willett Whitmore, one of the deans of modern urology, once said, 'Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so.' It seemed that I might have a chance to grow old. This perception was reinforced when I found Tom Feeney's site http://rattler.cameron.edu/ww/. To my mind he presents a very fair summary of the various facets of the disease which should be of interest to all men, diagnosed or not. There is also a link from this site to that of a man who calls himself Lorenzo Squarf whose views on life with prostate cancer are certainly unusual but worth reading.
Equally important was the discovery of the two-way communication that occurs on the Internet by way of chat rooms, message boards, mailing lists and the like. Treatment for prostate cancer has unfortunate side effects. The most common of these, resulting from surgery or radiation, are impotence and incontinence of both bladder and bowel. Hormone treatment, becoming ever more common, results in loss of libido and can lead to enlarged and tender breasts, hot flushes and mood swings. None of these subjects is likely to be raised for discussion by men in the club or pub. But they can be talked about on the Internet. The anonymity of the participants in the exchanges leads to an openness that simply could not be achieved in any face-to-face meeting. The respondents' depth of knowledge--much of it gleaned through practical experience--can be much more helpful than the theoretical, limited knowledge of a busy medical practitioner.
My conclusion, after months of study and discussion, was that there would be no clear benefit in having conventional treatment. Diagnosis is not an exact science and mine was close to what I found to be termed an 'insignificant' tumour. Studies show 10-year prostate-cancer-specific survival rates of about 98% for men with such tumours irrespective of the choice of treatment--or lack of it. The option I have chosen is categorised as 'Watchful Waiting', a term I abhor, with its connotations of fatal inevitability--like a goat staked out as bait in a leopard hunt. I prefer the term 'Conservative Management'. Essentially, I believe that my disease can be contained for long enough for me to die of some other cause. To this end, I have worked hard to improve the efficacy of the natural, and wondrous, defence system we all have. I am now fitter, physically, mentally and spiritually than I was four years ago. My PSA count, the main diagnostic and monitoring tool for prostate disease, is back in the normal range. Whilst I cannot claim to be cured, if I presented for examination today I would not be diagnosed as having prostate cancer.
Generally speaking, doctors are not happy about their patients using the Internet. In a recent British survey over half of the respondents wouldn't even consider recommending sites to their patients. Only 4 per cent believed the information provided by websites was sufficiently accurate and balanced. Much of the discomfort medical people feel comes from the challenge that a well-informed patient presents to the 'institutionalised doctor-patient power relationship'. Whilst this is understandable, no doctor, no matter how dedicated, can possibly keep up with every promising new development. The patient on the other hand is focussing on one thing only--'their' disease and treatment options. Good doctors should recognise the potential value of this. I believe their patients will, as I have.
[The title of this article was given by the editors at the magazine and not by Terry Herbert. Article reprinted with permission of the author.]
Spectator magazine is at http://www.spectator.co.uk/.
|
|
| This information is provided for educational purposes only and does not replace or amend professional medical advice. Unless otherwise stated and credited, the content of Phoenix5 (P5) is by and the opinion of and copyright © 2000 Robert Vaughn Young. All Rights Reserved. P5 is at <http://www.phoenix5.org>. P5's policy regarding privacy and right to reprint are at <www.phoenix5.org/infopolicy>.
|
|
