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I was alarmed recently to get a call from a mate who has just been diagnosed with prostate cancer.
Alarmed on two counts:
- Here was another friend diagnosed with the disease.
- 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:
- Prostate cancer tumours vary in aggression on a scale of 6 to 10 (Gleason score);
- They vary in size and degree of invasion of the gland;
- They may be confined by the gland, or have escaped to affect nearby tissue;
- They may have spread to other parts of the body;
- They may be detected by rising PSA – or not;
- They may be felt by a digital examination – or not;
- Prostate cancer may run in the family;
- The patient may choose any one of a number of treatment options – open surgery, laparoscopic surgery, robotic surgery; external beam radiation; brachytherapy (there’s more than one kind); hormone therapy; chemotherapy; immunotherapy, cryotherapy, natural remedies, active surveillance, etc, or a combination of two or more.
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)?
- All men above 50 should get themselves tested for prostate cancer. After the age of 60, it should be an annual event.
- 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.
- 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.
- 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.
- 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…
- 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.
- 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).
- 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).
- 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.
- 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.
- A lot of research is going into trying to establish whether PSA testing is effective, but so far the results are confused.
- A lot of research and money are going into new tests, drugs and treatments, especially in the US.
- 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.
- 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.
- 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
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.