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Archive for the ‘AWARENESS and MEDIA’ Category

PR WEB: A free guide has been published online for women with a man in their life who has been diagnosed with prostate cancer. READ MORE> Womans_Guide_to_PCa_Treatment

Women Against Prostate Cancer today announced the availability of A Woman’s Guide to Prostate Cancer Treatment: Supporting the Man in Your Life.

The new, free online, easy-to-read booklet provides information on the available prostate cancer treatment options, targeted for caregivers so they can assist their partner in making the often difficult decisions involved in choosing a treatment path.

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Don't be shy, doc - digitally examine me.

PROSTABLOG:  This is a joke, right – a NZ contest will be launched this week to rate men’s bum cracks as part of this year’s Blue September prostate cancer awareness campaign?

Am I being prudish, or will this seriously help persuade a man to go to his GP and ask for a prostate cancer checkup…that will involve the doctor performing a digital exam?

Digital exam – polite language for sticking a finger up your “bum crack” to feel the prostate for signs of cancer.

Isn’t convincing men the digital exam is no threat to their masculinity one of the big problems of prostate awareness?

Are we so far along the path of overcoming macho resistance (read homophobia) that we can joke about this in a serious awareness campaign?

Doubt it.

A story in today’s Sunday Star-Times newspaper announcing the bum crack contest said:

THEY CAN be seen on building sites throughout the country, are the bane of women’s lives and probably the delight of men’s – yes, the humble builder’s crack is again demanding attention.

A cheeky Auckland advertising agency has come up with a novel campaign called Rate My Crack in order to raise awareness for Blue September – the major awareness campaign of the Prostate Cancer Foundation of New Zealand.

The online campaign asks builders, both male and female, to take photos of their workmate’s rear end as it spills out of their jeans and send it in to be judged by the online community.

The owner of the winning ‘‘bum cleavage’’ will receive $1000 to spend at a Placemakers store.

Leighton Dyer, of Rascal advertising agency, said the company was looking for a light-hearted way to raise the profile of a serious disease.

He was not concerned the campaign would offend any sensitive souls – and he expected more than 90% of the entries to be from men.

Website http://www.ratemycrack.co.nz will go live on Tuesday.

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PROSTABLOG NZ: Kiwi prostate cancer campaigner Mark Ebrey sent this supportive note today about my small appearance in the Sunday Star-Times‘ magazine feature about people who reveal all on the web:

“I see you got an honorable mention in the Sunday magazine today. Well done.

I’ve got a petition currently before the Health Select Committee considering whether to review the LDR brachytherapy treatment option.

You will be interested to know I had the implant a month ago yesterday and to date – absolutely no side effects whatsoever, other than the pain over heart where the $24,000 bill is.

Am beginning to wonder about a disease I had no symptoms for, and treatment with no side effects – have I actually been conned?”

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NEW YORK TIMES: Arnold Palmer led the charge in popularizing golf in the United States in the 1950s and now, in retirement, he is in the vanguard of another movement: educating the public about prostate cancer. READ MORE>

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NEW YORK TIMES: Invasion of the Prostate Snatchers, by Ralph H. Blum and Dr. Mark Scholz, is a provocative and frank look at the bewildering world of prostate cancer, from the current state of the multi-billion-dollar industry to the range of available treatments. READ MORE>

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DIGITAL SPY: Corrie St binman Eddie Yeats (real name Geoffrey Hughes) is thought to be gravely ill in hospital after he collapsed with back pains at his Isle of Wight home.

The 66-year-old (right) had supposedly beaten prostate cancer after treatment last year. READ MORE>

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ONLINE ATHENS: A urologist who got prostate cancer has written a book about how he dealt with a disease he had been treating in others for years. READ MORE>

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PROSTA DROP: What happened on July 7 to drive readers away?

PROSTABLOG NZ:  Who were those people – and what did they want?

I’m talking about 100 or more souls – most of them from the US – who seem suddenly to have stopped looking at this blog.

They may have rumbled me, of course.

For months now, I’ve been using the word “catheter” as a tag (key word) on every post, based on my observation late last year that “catheter” is the most popular search word used by people searching the web looking for prostate cancer stuff.

Every day for the last six months, in the list of terms people used to find this blog, “catheter” would have 100 more mentions than any other word.

A single post (of more than 1350 now) called “All quiet in the western ward…” for a long time got more visits than all other posts put together. It has a drawing of a catheter in it, as well as a picture of our cat and one of comedian Billy Connolly.

This all reached a climax in July 7, when Prostablog was visited by 470 people in a single day, the first time 400 had been exceeded.

But since then – people have stayed away in their droves.

BIG DAY: July 7, when Prostablog's readership hit the big time - then crashed.

The blog now averages just over 100 visits a day (down from 230), and the proportion from the US has dropped from 67% to about 45%.

So who were they? And why did they suddenly decide to go elsewhere?

Or has there been some interference from some eminence gris lurking somewhere on the world wide web?

Perhaps they all belonged to a catheter fetish organisation, which finally saw through my shallow ruse.

Anyway. it may not be a bad thing.

I notice those who stay reading Prostablog for more than a couple of seconds have increased from 10% to 25%, which is encouraging.

There’s a website in NZ called Open Parachute which ranks the 200 most popular blogs in the country. Prostablog made it to number 23 in June.

I expect we’ll be down the list a long way this month.

But, what the hell: I’d rather have you high quality readers than those other guys.

NOTE: Prostablog is heading for 100,000 hits since starting in April, 2009. At one stage earlier this month I thought we would make it by now, but I’ll revise that in view of what’s happened. Maybe we’ll hit the magic mark in a couple of months.

NOTE 2: I’ve used “catheter” as a tag for this post. Maybe one of the fetishists will see this and come forward to explain himself. Maybe not…

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What I now know – or think I know – about prostate cancer

MY PC Adventure – Chapter 25

See the full story HERE>

I was alarmed recently to get a call from a mate who has just been diagnosed with prostate cancer.

Alarmed on two counts:

  1. Here was another friend diagnosed with the disease.
  2. His doctor told him to get in touch with me – because I’m an expert!

I hope very much the doctor prefaced the “expert”: with the word “lay”, meaning I’m a non-medical authority.

But I’m not keen on that label, either. I would never give medical advice, and I’m wary about giving any other kind, other than to point people in the direction of information sources I have found to be useful.

What people are after, I think, are:

  • Some comforting words from someone who’s been through treatment, a word of hope that their first thoughts about imminent death are likely to be misplaced (even though they will probably have heard truly expert advice to that effect from their medics).
  • Some translation of the medical jargon they have just been subjected to. Some doctors seem better than others at speaking in plain English, and all of them are justifiably wary about making predictions. Some may even unconsciously favour the kind of treatment they offer, to the neglect of other options.
  • Some insight into what they face. Men are suddenly very keen to know what treatment to choose, what happens with each kind, and what it will do to them, especially in terms of potential incontinence and impotence. And (if they’ve never had one) what it’s like to have a catheter.

So, am I in a position to help? What do I actually know about prostate cancer? Is my “little knowledge” a dangerous thing?

To the first question, yes, I can help a little, even if it’s to calm someone down and provide solid evidence that people do indeed live through the experience of prostate cancer.

But then we run into the big problem: every man’s case seems different. No two patients will tell you the same story, which is hardly surprising given the mathematical possibilities.

Consider the variables:

Do the maths: there’s any number of possible scenarios and outcomes.

Add to that the constant development and refinement of new drugs and treatments, and the option of taking part in drug and treatment trials, and nobody can say with any certainty just how any one newly diagnosed patient will fare.

All I can claim to offer in the way of help is to urge people to find out more for themselves so they can ask their medical practitioner the right questions.

As has been told on this blog (see John and Mary’s story), nobody has to take the bad news and the first opinion(s) and accept their fate without question.

Mary is an average Kiwi woman with no medical training who refused to accept everything the doctors said about her partner’s options. She researched so thoroughly she was able to query what she was being told in the same technical language as the doctors.

Most people could do that, but it’s not easy. When first diagnosed, I attempted to find out more on the internet (not that I didn’t feel comfortable with the urologist’s views) and it seemed overwhelming.

It wasn’t until after my surgery – when I had a couple of months with nothing do but get better – that I researched the ‘net properly, and identified the very few websites worth looking at.

Most of the prostate cancer stuff on the ‘net is either

  • incomprehensibly technical;
  • incomprehensibly sensationalist (read: most news media);
  • written by public relations hacks paid by drug companies,
  • the ranting of idealogues and polemicists.
  • or porn-related (prostate milking, whatever that is, seems a big fetish with some).

The aim of this blog has been to mine technical sites (like Uro Today) which report the latest news and research and then try to translate the incomprehensible into the digestible.

It’s noticeable that whatever else doctors and researchers learn about their trade, little of it encompasses the ability to communicate.

I’m often helped in this task by the writing of Mike Scott, the non-doctor webmaster of The New Prostate Cancer Infolink, whose prose is fluent and clear. He runs the best site on prostate cancer in the world.

So, what do I know (or think I know)?

  1. All men above 50 should get themselves tested for prostate cancer. After the age of 60, it should be an annual event.
  2. It must involve both the PSA blood test and the digital exam. Some people (like me) don’t register PSA change in the event of cancer.
  3. A worrying number of men pretend prostate cancer (or any other kind of disease) doesn’t exist and never go to the doctor for a checkup.
  4. If you have been, and the news is bad, get more than one medical opinion of your diagnosis, preferably including one from a cancer specialist (oncologist). Urologists tend to favour surgery, radiologists radiotherapy, etc.
  5. There’s rarely any reason to panic, except perhaps if the diagnosis is late in the piece and the cancer has spread. But even then, it depends…
  6. As many as half of all men will get prostate cancer, but most won’t ever know because they’ll die of old age or something else before it shows up.
  7. Up to 3000 Kiwi men a year are diagnosed, and about 600 die each year, figures that have not changed much since the mid-90s when PSA testing came along (and there was a sudden rise in diagnoses at younger ages).
  8. So your chances of dying, statistically speaking only, are about one in five of those diagnosed, who in turn represent about 15% of the male population. So that’s about 3% of all men (but don’t rely on my maths – do some research of your own on the Ministry of Health website).
  9. Maori and Pacific Island men have much worse stats, which suggests they ought to be offered mass-population screening (like breast and cervical cancer) by the Government.
  10. Few, if any, governments in the world offer mass-population screening, saying there is too big a risk of over-diagnosis and over-treatment, that side effects of treatment are unacceptable if someone didn’t need treatment in the first place, and that PSA testing is unreliable.
  11. A lot of research is going into trying to establish whether PSA testing is effective, but so far the results are confused.
  12. A lot of research and money are going into new tests, drugs and treatments, especially in the US.
  13. The holy grail for researchers is a test that will tell if a prostate tumour is dangerous and needs treatment, or if (as in most cases) it’s so slow-growing (indolent) it can be ignored.
  14. The four main treatment options and their variations – surgery, external radiation, brachytherapy, drugs (hormone and/or chemo) – are highly effective to some degree or other, but all have their down-sides, such as urinary problems, impotence, bowel problems, depression, risk of a recurrence of the disease, etc.
  15. I know a lot about:
  • open surgery radical prostatectomy (because that’s what I had), but only so far as it affected me;
  • having a catheter. No problem in my case because the urology nurse who removed it knew what he was doing. And I’ve never had to self-catheterise myself, a tricky procedure, judging from the accounts some men give.
  • the importance of getting fit before and after the operation;
  • the need to change diet – to cut down on red meat, and increase intake of fine Central Otago pinot noir wines;
  • the importance of a supportive partner, friends and family;
  • not rushing back to work;
  • the need to avoid stress;
  • changing your views on life (buy a campervan!);
  • not rushing into resuming sex.

The danger of a little knowledge

I read new stuff about prostate cancer every time I check my Google Alerts and RSS feeds, and I’m regularly surprised by new slants on aspects I thought I was familiar with.

Prostate cancer has become one of the biggest medical industries in the world, no surprise given its high incidence (it’s the most reported cancer in most countries).

My “little” knowledge is indeed that.

But one advantage I have is an ability to translate the lexicon of the prostate industry into that of every man.

It’s what journalists can do, especially aging ones who get the idea into their heads that here, at last, is some good they can do.

Read the full My PC Adventure story HERE>

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PROSTABLOG NZ: The BBC people who wrote this headline obviously know nothing about prostate cancer:

US senators call for Lockerbie bomber release probe

Four US senators are calling on Britain to investigate the circumstances surrounding the release of the man convicted of the Lockerbie bombing. READ MORE>

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