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Posts Tagged ‘quality of life’

Hi all

I haven’t been on this blog for a while, so apologies to anyone who has commented or asked questions.

I am teaching blogging to my journalism students today and showed them Prostablog – and discovered a large number of pending comments. They are mostly now posted (apart from the spam ones).

The reason I have stayed away, I guess, is I consider myself prostate cancer-free these days. My PSA doesn’t register, and my checks are down to once a year.

It is three and a half years since the surgery to remove my prostate and while I still have to get to the five year post, then a decade, I don’t think much about it.

Please take that as a positive – it could be seen as selfish on my part not to continue blogging. However,  I just ran out of stuff to say, and monitoring the web for prostate cancer news was taking several hours a day, which I now need to spend on doing other stuff.

I’m 66 and have just retired from journalism teaching. I will be returning to my hometown of New Plymouth in Taranaki to finish a book and maybe write some others. I will be working with my brother, photographer Rob Tucker, who has a few projects for me to contribute some writing to.

Prostate cancer changed my life in one important way: my wife and I enjoy camping, so decided to abandon home ownership in favour of a big caravan, which we tow around the country.

Although it might seem a crazy option in mid-winter, in fact we are finding it a great lifestyle at any time of year. Even the cat has got used to moving around.

So there we are. I feel lucky. Here’s all the best to all of you just starting the journey I began on Christmas Eve, 2008.

If you want to discuss anything about prostate cancer with me, please use my gmail address: edwardtuckr001@gmail.com

But remember, I’m not following the topic closely any more, so may not be able to help. And my advice is always cautious – I’m not a doctor, and I believe every man’s experience is different and personal.

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PROSTABLOG NZ: My last PSA test recently showed it continues to be undetectable, some 20 months after my surgery in March, 2009.

But I’m not getting cocky just yet (forgive the pun).

From what I’ve read about prostate cancer treatment, if the cancer bug has got out of the organ during/after a prostatectomy, there’s a good chance the first signs will come two years after the operation.

My two-year anniversary comes up in a couple of months – so wish me luck.

It’s interesting how long it takes to fully recover from the surgery’s effects.

My scar is virtually gone and I’ve felt fit for ages.

There’s no incontinence. I haven’t done the pelvic floor exercises for more than a year, but there’s never any problem with not being able to hold it in, even when I’m busting.

Not that I put myself in the busting mode if I can avoid it.

So, hey, no regrets and no real worries. I’m bloody lucky.

Well, there is one worry – the number of friends and people I know who have been diagnosed. Talk about an epidemic.

And I wonder if the NZ Parliamentary Health Select Committee will ever get round to reporting back on its prostate cancer inquiry…

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PROSTABLOG NZ:  HERE are four key issues the NZ Parliamentary inquiry into the detection and treatment of prostate cancer ought now to be focusing on:

  • Mass screening…or not: Not. The evidence in favour of mass screening of all middle-aged men for prostate cancer is not sufficiently strong in statistical terms to overcome the counter-arguments concerning needless and over-treatment and high likelihood of after effects that will blight quality of life.

But…it’s not strong enough yet. That may change as more studies are done and closer analysis of the large random trials is completed. PSA testing may also improve, or be replaced with something better, a test that defines the actual risk to the patient.

  • Guidelines to GPs must be revised. Currently, GPs are forbidden by the Ministry of Health to routinely offer PSA tests and/or rectal examinations for prostate cancer unless a man asks, or mentions symptoms. Since this can be a symptomless disease (until it’s too late), that is unacceptable. It also presumes that people don’t move around, change doctors, lose track of medical records, or simply have little idea of the implications of dad dying of prostate cancer.

If the Ministry of Health wants to avoid high-risk treatment being offered unnecessarily, it needs to move the initial gatekeeping further up the food chain to the specialists.

  • Specialists’ advice needs to be delivered via a more balanced and less costly method. At present, the system works well enough up to the point the pathologist finds signs of cancer in biopsy samples.

But after that, men are left to fend for themselves when it comes to seeking advice from a range of authorities. Some don’t bother, and just go with what the urologist offers. Some can’t afford the $1600 charged by a cancer specialist (oncologist), who may be the most neutral source of advice available.

In the US, the first specialists in the hierarchy, urologists, earned themselves the unenviable moniker of “prostate snatchers” because of the lucrative, medical insurance-backed business of prostate surgery.

How about panels of doctors representing the main treatment options in NZ (surgery, robotic surgery, external beam radiation, brachytherapy, watchful waiting) reviewing the case notes and offering clearly explained options to patients?

  • The public needs to be kept up to date – in layman’s terms – with diagnostic and treatment developments. This is not happening at present. The Ministry and its satellite committees do not have readily available, up-to-date information on the web to help men with newly diagnosed prostate cancer become fully informed before making one of the biggest decisions of their lives.

As wealthy male baby boomers hit the danger zone, enormous amounts of US, European and Asian money are going into researching and developing new drugs, methods of surgery and radiation, diagnostic tools and a bewildering range of related methdologies.

That’s the point – it’s bewildering to the average Kiwi, who must hope his medics are keeping up to date and that the government is adequately funding new treatments.

For example, there is Provenge, a new $100,000+ drug regime that will extend life for a few months, and which is now selling big in the US. When will we see it here?

Communicating the relevance of the overseas prostate industry boom to Kiwis cannot be left solely to the news media here: that’s worse than leaving it to chance and the public relations industry.

Few, if any, journalists in NZ take an abiding interest in prostate cancer (why would they – it’s one of many diseases), and what they do write is sometimes ill-informed, incomplete, inaccurate and out of date.

Finally, the Health Select Committee would be wise to keep its files open on this inquiry. It would be a mistake to shut the doors on a tsunami of prostate cancer information that emerges daily on the web.

Developments are moving so quickly, the committee should require the Ministry of Health to report regularly about what’s happening. The inquiry report, when it finally emerges, should be an interim one that can be updated over time.

The committee is wrestling with questions that are far from settled.

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WOWT.COM: The American Cancer Society is helping newly diagnosed prostate cancer patients through their Man to Man Peer Support Programme. READ MORE>

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URO TODAY: Decline in quality of life after radical prostatectomy may be less in patients who got regular exercise before the treatment. READ MORE>

These findings require further study with larger samples to confirm results. If confirmed, findings suggest exercise pre-operatively may improve [life quality] outcomes after radical prostatectomy.

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VIRTUALMEDICALCENTRE.COM: Prostate cancer patients who regularly exercise during and after cancer treatment report having a better quality of life and being less fatigued, according to researchers at Henry Ford Hospital in Detroit. READ MORE>

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URO TODAY: Benign prostatic hyperplasia patients in whom prostate cancer is suspected and who have urination problems, with a previously negative biopsy result, can undergo transurethral resection of the prostate, which treats bladder outlet obstruction and gives early diagnosis of prostate cancer. READ MORE>

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