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URO TODAY: Prostate patients treated with cryotherapy have an 87% 10-year survival rate, according to a group studied in the US.

This compares with survival after radiation of 93%, 88%, and 80% for low-, medium-, and high-risk groups, respectively. READ MORE>

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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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URO TODAY: Salvage cryotherapy appears to be the treatment of choice for patients who have a rising PSA after radiation therapy, provided their PSA level is less than 4ng/ml and they were good candidates for local therapy prior to radiation therapy. READ MORE>

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NEW PROSTATE CANCER INFOLINK: A table showing the chances of cancer returning after cryotherapy (freezing) treatment of prostate cancer has been calculated by researchers who looked at about 2500 cases. READ MORE>

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MAY 29: NEW PROSTATE CANCER INFO-LINK: Cryotherapy has a significant role to play in the evolution of focal therapy for prostate cancer – if we can learn to successfully identify those men who need and can be effectively and safely treated using focal therapy. READ MORE>

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MAY 28: URO TODAY: Prostate cryotherapy for localized prostate cancer is an evolving but viable therapeutic option. Long-term data are still needed to establish a definitive role for cryosurgery in prostate cancer treatment. READ MORE>

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MAY 22: PROSTABLOG NZ:  How many questions did you ask your doctor when you got the news you have prostate cancer? A dozen? More?

I can’t remember now, even though it was less than six months ago, but I’m guessing it would barely have broken double figures, even by the time I was on my third visit to the urologist.

Did you know there are at least 28 queries you should probably make, and another 22 if you’re looking at brachytherapy?

I know this from an excellent new book on prostate cancer just published by the Michael Dattoli and his colleagues in Florida – The Dattoli Blue Ribbon Prostate Cancer Solution:  How to survive and thrive without surgery (February, 2009).

DattoliBk 1It’s a 260-page manual on the latest techniques for treating prostate cancer, most of it written by Dattoli, whose pen portrait in the back says he is “a board-certified oncologist with more than 20 years of brachytherapy experience and has performed thousands of prostate implant procedures…a noted author and speaker in this complex field of medicine.”

Aha, perhaps I hear you say:  he’s biased towards radiotherapy and hence the tilt at surgery in the book title.

Maybe. I’m hardly in a position to judge, being merely a humble prostate patient, although one who has done a fair bit of journalistic investigation into the topic during recent recovery “downtime”.

This book seems to me to be very thorough in its examination of prostate treatments, research, survival and success rates, issues and dilemmas, and refers to every branch of the burgeoning field of treatment I’ve so far come across.

The case he puts for radiotherapy/brachytherapy and combined drug treatments (if needed), in the second half of the book, seems convincing to me.

Essentially, he’s saying that advances in radiotherapy equipment and techniques make its use so accurate and effective that people with aggressive tumours and/or cancer that’s got out of the prostate box are better served by his approaches than surgery or some of the many experimental but unproven (long-term) therapies now on offer (in the US, anyway).

The book reinforces for me how crucial it is to discover prostate cancer at the earliest possible time, since it is one version of cancer that can conceivably be “cured” when discovered at its least developed and aggressive stage.

At that point, it seems surgery is still as good an option as Dattoli’s approach, although he attacks the notion that getting it cut out is an end to the matter. It may not be, even with contained, low-aggression varieties like mine.

The book explores, and partially dismisses, many of the newer approaches, such as cryotherapy (freezing the tumour), hyperthermia (heating it), HIFU (high intensity focused ultrasound), many new drugs (because there is no long-term research done yet) and most versions of surgery.

He strongly advocates the latest approach to radiotherapy – four dimensional (the fourth is motion) intensity modulated (rather than short, high dose) radiation therapy (4D IG IMRT) – which he uses at his clinic, the Dattoli Cancer Center and Brachytherapy Institute of Sarasota, Florida.

With this complex treatment mode, he says the centre can achieve a very precise radiation attack on the tumour(s) with little collateral damage and few long-term after effects (depending, of course, on the patient).

It sounds very expensive. Pictures in the book show space-age technology, which obviously doesn’t come cheaply.

In a couple of discussions in the book, Dattoli borders on the disingenuous when he says centres using other kinds of expensive gear push its efficacy partly because they have big investments to recover.

That said, his record seems impressive, and 14 years of results are highly praised in an “independent” review by Charles E. Myers Jr MD, founder and director of a body called the American Institute of Diseases of the Prostate:

“Many men with intermediate to high-risk cancer treated [by Dattoli] with radiation to the prostate gland and pelvic lymph nodes with external beam radiation and seeds remain free of disease out to 14 years…Radiation therapy is consistently more effective when combined with androgen withdrawal. Faced with these facts, I can only conclude that radiation therapy can kill prostate cancer stem cells or in some way arrest their ability to go on to establish metastatic disease.”

Even ignoring the book’s main thesis (the superiority of 4D IG IMRT), it contains usefully detailed outlines of all aspects of prostate cancer, written in superbly accessible language. Everything is explained and translated for the layperson.

That alone makes it worth the read, although it’s not a quick read, given the fact-heavy nature of the explanations.

It contains other helpful material, including a guide to the foods we should eat (out goes my four-red-meat-meals-a-week diet) and a rundown on the latest drugs being trialled and/or used.

As a footnote, I should add that nothing I read in this up-to-date resource on prostate cancer makes me think I made the wrong decision electing radical prostatectomy. For me, it still feels 100% the right way to go. I believe I was well advised.

Further footnote: I’m interested to know how many of the treatment techniques canvassed by Dattoli are available in NZ. I suspect we trail by a long way, but perhaps there’s some advantage to that: we can observe how various developments pan out in what is undoubtedly the prostate capital (well, country) of the world.

And those 28 questions? I’ve reproduced them here, for those many men in the future who are going to get the bad news:

 Dattoli 1

Dattoli 3Copies of the book can be obtained from:

Dattoli Cancer Foundation, 2803 Fruitville Road, Sarasota, Fl 34237, US.

They cost about $US23 with postage included.

Read a 15-page extract from the book where Dattoli discusses hormone therapy: HERE>

Go to the Dattoli website HERE>

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