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Posted by Brian (U14034607) on Wednesday, 17th June 2009
Thank you Radio 4 for making it possible for so many of us to share important experiences and points of view. It has been a rare and valuable opportunity to compare notes. Prostate cancer has been a Cinderella disease. This kind of exposure is helping to change that.
Will all the postings be available for people to access after the message board closes on Friday? I hope so – even as an archive item.
It is striking how much variation there is in prostate care. I know a Cumbrian man whose urologist only considers a biopsy when the PSA score reaches 15. This is way above what some have reported here. Only when mine passed 10 was the procedure mentioned.
I have already posted that I declined a biopsy on grounds it can cause metastasis. Has anyone reading this ever been told by a GP or urologist of the risk of needle tracking or cancer cell seeding from the procedure? The cells can remain dormant in the body for up to ten or more years making it next to impossible to know what originally triggered cancer spread.
This can be found in an online search:
“The spread of cancer cells is not the only potential risk associated with a biopsy, particularly for prostate patients. During a needle biopsy, a device is inserted into the rectum, and a needle is shot through the thin lining that separates the colon and the prostate. There are many tiny ducts in the prostate which are damaged each time the needle goes in. As a result, the ducts may become blocked with scar tissue and other matter, and this can inflame an existing infection, such as Prostatitis or BPH. Naturally, if you undergo more than one biopsy, the damage to the ducts is dramatically increased.
The unsettling truth is that many men are never quite the same after a prostate biopsy.”
I raised this last point with the urologist. To my surprise, he agreed.
I have no wish to alarm others with this information but believe that patients should be given the facts. My metastasis concerns were brushed aside first by my GP and then the urologist on the grounds “risk is minimal, it is a safe procedure carried out on millions of men”. It was only when I presented credible medical evidence that what seemed to me prostate complacency changed. They are not used to being challenged, probably because people are numbed by the idea of having cancer.
Some of you have been given non-invasive screening but I was told there was nothing available on the NHS – and that if I refuse a biopsy “no urologist will treat me”. I had to discover the PCA3 genetic marker screening trial for myself as an alternative to inconclusive PSA testing.
The National Institute for Clinical Excellence states “The serum PSA level alone should not automatically lead to a prostate biopsy.” But if my experience is anything to go by, it is almost the first weapon chosen from the urologist armoury. I was initially seen by a nurse who was most surprised when I declined the biopsy conveyor belt. So an appointment was made with the urologist to ‘go into my concerns’.
This is an interesting medical quote “the number one reason PSA rises is prostatitis, not prostate cancer”. Prostatitis isn’t life threatening.
Another concern is how variable our communication experiences are with the medical profession. The practitioner/patient relationship is extremely important - but the level and quality of information shared with us is a lottery.
The excellent book on the subject: Testing Treatments - Better Research for Better Healthcare (now out of print) is available as a free download at: www.jameslindlibrary... Its guiding principle is:
“Patients are often seen as the recipients of healthcare, rather than participants.
The task ahead is as much for us, the lay public in whose name medicine is practised and from whose purse medical practitioners are paid, as for doctors and medical researchers. If we are passive consumers of medicine we will never drive up standards.”
Be sure to read the reviews by The Lancet and The British Medical Journal which are important in their own right.
Lifestyle (including what we eat) is clearly a critical health factor, but the best ‘advice’ most of us receive is “eat a balanced diet”. What practical use is that?
Here is food for thought on lifestyle. The 1949 Chinese Revolution cut medical staff by half (killed or fled the country). Mao's era saw population increase from 400 to 800 million. Chronic illness caused by poor lifestyle, overwork, bad sanitation, and starvation diet meant healthcare was in crisis.
So The Chinese authorities turned to T'ai Chi and Chi Gung to improve health and reduce pressure on severely limited healthcare resources. It worked. Health was stabilized and improved for between 100 and 200 million people - and a public backlash averted.
"The First Wealth is Health" as Ralph Waldo Emerson wisely put it. I wish it for everyone!
Posted by Brian (U14034607) on Friday, 26th June 2009
I second what Robin says about this message board.
Take a bow Beeb
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