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Posts Tagged ‘Movember’

PROSTABLOG NZ: Um…what’s going on?

I haven’t posted new prostate cancer stories for 10 days…and I’m getting record hits on this site.

What is it with you people? I’m trying to retire (temporarily, probably) here, and still you keep coming in for a look.

Obviously, I’ve got a lot to learn about blogging.

Incidentally, did anyone catch the RadioNZ item about Movember this morning? Pure PR. Hopeless journalism.

I’m ashamed at my own so-called profession’s (journalism) lack of ability to drill down into the story of NZ’s dual prostate cancer awareness and fund-raising campaigns.

One question, though: how much money did Blue September raise and what will it be used for? Anyone care to enlighten us?

Meantime, I noticed a poster on the bus on my way home from work today. It was about the breast cancer Pink Ribbon campaign and it said one in nine NZ women is “affected” by breast cancer.

Not good.

But how much worse is the possibility that one in two Kiwi men is affected by prostate cancer?

 

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adam-garone-pPROSTABLOG NZ: Ex-pat Kiwis in the US, Canada and the UK are great proponents for Movember and help spread the word about the grow-a-mou prostate cancer campaign, says the charitable organisation’s CEO and co-founder, Adam Garone (left).

One thing the Kiwi men of Movember should be very proud of is that they helped make Movember a global campaign.

I’m constantly amazed at how many Kiwis I bump into in the US and Canada, where I now reside.

Our main objective in taking the campaign global is that it will provide infinitely more funding to prostate cancer research than we could raise in Australia and New Zealand.

That funding is moving us closer to better screening tests and treatment options which will benefit prostate cancer patients and survivors across the globe.

You may be interested in this video, which explains the funding impact Movember is having in the US on prostate cancer research.

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PROSTABLOG NZ: Moustaches or blue paint? What works best when it comes to helping prostate cancer patients?

This may be a dilemma for NZ’s generous public as two Australian-based organisations go up against one another in annual Kiwi campaigns to get attention – and money – for the world’s most devious killer of men.

Marketing company (MWC Media) has just completed Blue September, which has just run for the second time here.

Seemingly unique to NZ and Australia, Blue September uses celebrities, blue paint on faces, clever branding, media events and photo-ops to raise the profile of the Prostate Cancer Foundation of NZ, a bunch of mostly volunteer prostate cancer survivors and their families.

The other is charitable organisation  Movember. It hooked up with the Foundation in 2006 and in two years raised more than $2 million for the foundation’s coffers.

But in 2008 it switched its benevolent aim to the Cancer Society of NZ and the Mental Health Foundation.

Also big in Australia, the US, Canada and the UK, Movember is in the process of launching once again for next month.

This week, it got national press and web attention with the announcement of a survey it had done on how poorly men look after their health (no details of the sample size, who did the survey, etc, were released, going by the media reports).

Movember began as the 2003 brainwave of four Aussie blokes and has since grown into a global operation which raises funds for the US Prostate Cancer Foundation, the Prostate Cancer Charity in Britain, and the Cancer Council in Australia.

Australia and NZ seem to be the only countries where there are two prostate awareness campaigns running closely together (separated by October).

Who raises what, who gets the money and what’s it spent on?

This writer knows the answers so far as the NZ Prostate Cancer Foundation is concerned (I was a board member for a couple of month).

They were published here in August, when we provided an account of the foundation’s annual results released at its annual meeting in late July.

What about the Cancer Society of NZ, the 50% beneficiary of Movember (it’s unclear how the Mental Health Foundation got into the act, but we have asked Movember. There has been a delay because earlier this month its NZ website was not working)?

Some questions were put to Dalton Kelly, the Cancer Society’s CEO, who readily provided detailed answers today.

Here’s what we asked, and here’s what he said:

Hello Jim – thank you for your email.

We are very happy to share our involvement with Movember and the funding we have received from them. We have very detailed project plans and accounting processes, which we use to report back to Movember on a regular basis, so I can do this straight away for you.

How much did the Cancer Society receive from the Movember organisers last year?

The Cancer Society received 50% of funds raised from the 2008 Movember Campaign. The Mental Health Foundation was the recipient of the other 50%.

What was that money spent on?

The money was divided into a three-way split – one third research, one third for regional projects and one third for national projects.

The research share was awarded in our last grants round to two projects:

To improve the health and quality of life of prostate cancer patients on androgen deprivation therapy by programmed physical activity

Dr Justin Keogh and Dr Daniel Shepherd, School of Sport and Recreation, AUT University, Auckland. Money from this grant round will be used by the investigator to explore how to best get men with prostate cancer into exercise programmes and how they may stay in it. Men on hormone treatment for prostate cancer lose some strength and exercise may reverse this.

RADAR prostate cancer trial

The biggest prostate cancer trial in Australasia has been running since 2007. Associate Professor David Lamb, based in Wellington, is investigating how long to use hormone therapy in prostate cancer, and whether the side effectives of treatment (osteoporosis) could be reduced by the use of bone-hardening drugs (bisphosphonates).

So far the regional budget has been awarded to eight regional projects:

  • Field Days – men’s health with a focus on prostate cancer – Waikato.
  • Developing a resource being a hardware education tool for prostate cancer – Central Districts.
  • Men’s Health Challenge brochure delivered to the RFU – Taranaki Centre.
  • Workplace-based men’s health initiative with a focus on prostate cancer (with an intention it will be developed into a national model) – Wellington
  • A prostate cancer support project to visit rural areas using kaumatua who have had prostate cancer to talk to the men/women and also a project with all the Rotary Clubs focusing on prostate cancer – Gisborne/East Coast.
  • What do men want? A series of focus groups asking men about how they want information about prostate cancer delivered to them – booklets, advertising, and also reviewing the Cancer Society’s current prostate cancer literature for suitability – Auckland.
  • Hawkes Bay A&P Show – Men’s Warrant of fitness

National Office has spent some of its allocation on the Men’s Health Challenge – targeting organisations such as the Defence Forces, Fire and Police Service where the employees are largely men.

What proportion was spent on prostate cancer?

All the money has been spent on prostate cancer in the sense that all the projects have a focus on prostate cancer and there is a component in every activity addressing prostate cancer.

In addition the projects promote reducing risks behaviours – such as not smoking, eating well and exercising -as we see these as an important aspect of public education.

What amount do you expect to receive this year?

We don’t really have any idea – we have not made any projections.

What will this year’s proceeds be spent on?

We plan to repeat the exercise of one third to research, one third to regional projects (which there will be a grant round again for) and one third to developing national programmes and resources focusing on prostate Cancer

What proportion of the overall sum raised by Movember is given to your society?

Once expenses are taken out, the Cancer Society receives half the money in conjunction with the Mental Health Foundation.

How much did the society receive from the Rowing For Prostate team in the Indian Ocean Rowing Race? I understand you agreed to be a beneficiary of that. The team apparently raised 24,000 pounds for the UK Prostate Cancer Charity.

The Rowing for Prostate Team approached the Cancer Society of New Zealand to ask us to be a beneficiary for this fundraiser in New Zealand.

Initially, as was Movember, the Rowing for Prostate team had aligned itself to the Prostate Cancer Foundation. Both organisations found it very difficult to work with the Prostate Cancer Foundation and approached us instead.

We felt the project had a great deal of merit in that the boys were very high profile, committed to spreading the word about prostate cancer and were good role models in terms of living healthy lives.

At this stage we do not know the amount we will receive from this fundraising event.

On this last question – how much came from the four English expats living in NZ who made up the Rowing For Prostate (RFP) team – Prostablog can assist to a small degree.

We found an English fundraising organisation called Just Giving that handled the RFP fundraising, which involved some radio stations in Auckland and a Rowing For Prostate website (now gone).

It says the rowers’ target was £24,000.00 ($NZ51,827.43), its main beneficiary is the UK Prostate Cancer Charity, and the target was slightly exceeded (£24,145.03 raised so far).

Prostablog has emailed the website to ask how much of the money is coming back to the NZ Cancer Society, but so far there is no reply.

A similar request made to the organisers of the Indian Ocean Rowing Race referred us to the Rowing For Prostate team, but our inquiry some weeks ago has drawn no response.

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NZPA: NZ Prime Minister John Key has pledged his support for Movember – but he will not be sprouting facial hair. READ MORE>

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PROSTABLOG NZ: While many Kiwis probably still associate prostate cancer fund-raising with moustaches and men growing them each November, our main prostate cancer group no longer gets money from that source.

The Prostate Cancer Foundation of NZ has moved to a new money-raising strategy called Blue September, which will launch next month with a range of activities.

Meantime, Movember continues to be an international event, as shown by this British report:

Haulage companies can help raise awareness of the most common type of cancer in the UK, as well as raise money for charity by encouraging (male) employees to grow sponsored moustaches in November.

The international event, called Movember, raised £2m last year for the UK’s Prostate Cancer Charity, which is calling on truck drivers across the UK to prove that combating male disease is a macho mission.

Movember will probably run in NZ again this year, but the money goes to the Cancer Society, whose policy on screening has not been reviewed for several years. However, some of its funding does go on prostate cancer research.

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TonyMAINPROSTABLOG NZ: The NZ parliamentary inquiry into prostate cancer closes off its submissions this Friday…and to mark the occasion, I want to write about a man called Tony.

He’s a mid-50s Kiwi bloke. Friendly, articulate, life-experienced, a bit more adventurous, perhaps, than some.

He and wife Marlene (at right) run an excellent bed and breakfast in Mt Eden, Auckland, under the shadow, almost, of where $300 million of my money is being spent revamping Eden Park for the rugby world cup in 2011.

Tony drove trucks across America for a while, until the mid-2000s. Marlene missed him, so joined up, taking the wheel during daylight. They had a fantastic time.

TonyMAIN2But now they’re back home, with Tony working three jobs as they build up the B & B (left) during the recession.

He runs a disability transport service with his vans, walks people around central Auckland city at night telling them ghost and murder stories, and helps Marlene with the homestay.

By all odds, Tony has a 50% chance of hosting a cancer in his prostate.

He doesn’t know it yet, either way. He hasn’t been checked. He’s been too bloody busy.

But now he’s going to the doc and he’ll endure the finger up his backside and the scratch in his arm.

Why? Because Lin and I stayed with Tony and Marlene last weeked and he got an earful from me about getting checked.

Why am I telling you this?  Because Tony is fairly typical of most of the Kiwi men I know (the ones who haven’t had prostate cancer). They either don’t get tested, get only the PSA, or were tested “once” and think it’ll be fine for a few years.

They are what the Health Select Committee inquiry into prostate cancer screening and testing is about.

Two bitterly opposed protagonists

Anyone who thought NZ’s recent prominent murder trials (Bain, Weatherston, et al) were problematic for their juries, spare a thought for the Health Select Committee.

Not only must it contend with the politics of health care, it also faces two ferociously opposed lobby groups that can each present a compelling case.

On one side will be the NZ prostate community, comprising prostate cancer patients, survivors, some of their medics (GPs, urologists, urology nurses, oncologists, etc), and a vociferous band of patient advocates, the 330-strong Prostate Cancer Foundation.

On the other is the health care bureaucracy, encompassing a heavyweight team of health professionals, managers, advisers, epidemiologists, academics, researchers and various subgroups that include some GPs…and the NZ Cancer Society.

Both will lobby the inquiry with statistics, research, study results, precedents, and on one side, at least, some emotionally gruelling anecdotal evidence.

What will each side say?

The bureaucrats (the Ministry of Health and its pilot fish advisory committees) will say what it has always said: we should not adopt a screening and testing programme like that offered to women for breast and cervical cancer because it will do more harm than good.

Their argument is strong, and is the same one argued by other governments’ medical agencies.

It is this: many men (maybe 50%) will get prostate cancer in their lifetime, but only a few (12% to 16%) will contract a form that has the potential to kill them – and there is, as yet, no way to know (before treatment) which kind a man has got.

They say if there is outright encouragement for all men to be tested, whether they have symptoms or not (most won’t, initially), it will lead to unnecessary treatment.

This would cost the government a lot more as well, some argue, but that’s not a point the bureaucracy will highlight, since it doesn’t sound very humane.

Meantime, leave it to patients to raise such matters with their GPs, then make their own decisions based on facts they glean from consultation and research (ie, Dr Google).

The bureaucrats will say there is good reason to trust GPs to do the right thing.

A survey of nearly 350 general practitioners published in 2003 (GP survey 2003) found 74% would PSA test a 55-year-old man who asked (or presented for an annual check-up), with that number rising to 93% if the man’s family history included prostate or breast cancer.

The prostate community argues that since PSA blood tests became widely available in the 80s there has been significant decline in the number of deaths from prostate cancer, and this could be accelerated if screening and testing were promoted to the whole male population.

They say leaving it up to men to raise prostate testing with their doctors is not good enough.

Some men don’t go to the doctor unless they have to, which is a particular problem with prostate cancer, a devious disease that often shows its face when it’s too late for treatment.

Non-consultation is a factor that may apply particularly to Maori and Pacific Island men: the former have twice the death rate of non-Maori. No statistics are available for PI men, it seems.

The prostate community is concerned that some GPs are confused about their role in the prostate process.

Some refuse to test, some don’t proffer advice unless the patient speaks up first, some offer PSA only, some offer both PSA and digital exam. Some men die as a direct result of such a hit-or-miss system, the PCF says.

The foundation and its medical advisers know many cases of men who discover prostate cancer too late.

These are tragic stories, exemplified by the account being written on this website by Mary about her struggle with the medical profession to get treatment for her husband, John. It’s a heart-breaking tale.

There is some bitterness in this debate.

The prostate community is seen as deeply swayed by the emotional influences of suffering the disease or benefiting from dispensing treatment; the bureaucracy is considered heartless, unduly influenced by statistics, gender-biased, and penny-pinching.

Both sides are gathering their forces as this is written.

The Ministry’s line, probably, is encapsulated in advice it received from its satellite National Screening Advisory Committee this winter, after the committee examined the results of the two large overseas screening studies reported in March.

It recommended the Director General of Health should note that:

a) the benefits of PSA screening for prostate cancer identified in the European trial were small;

b) no benefit of prostate cancer screening was identified in the US trial;

c) both trials identified considerable screening harms related to over-diagnosis and over-treatment;

d) the benefits of PSA screening identified in the European trial were observed using an average screening interval of four years, whereas a screening interval of one to two years is more commonly used in general practice;

e) the utility of prostate screening increases with age;

f) a longer study follow-up period may alter trial results; and

g) a watching brief of these two prostate cancer screening trials should be kept, including similar trials of prostate cancer treatment effectiveness, to inform men about making prostate screening decisions.

There is some inevitability, then, about how this inquiry will proceed.

The Ministry hasn’t changed its stance, and the PCF has grown all the more powerful since it gathered considerable funding from the Movember crusade in 2007.

Which suggests the outcome will be influenced by political expediency. As these things usually are.

It’s not a good time to be appealing to a government that’s busy slashing spending in all sectors.

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BLUE BRANDING: Members of the Prostate Cancer Foundation with balloons used by a marketing company to explain the new Blue September fundraiser.

AUGUST 1: PROSTABLOG NZ: A new executive committee to run the Prostate Cancer Foundation of NZ (PCF) was elected by 50 PCF members at their annual meeting in Napier.

Long-time president Barry Young, Thames, was re-elected for his sixth term, after a secret ballot when he was challenged by Hamilton member Peter Forman.

Young’s wife, Carolyn Young (pictured with Barry), stepped down as long-serving Foundation secretary and was replaced unopposed by Ian Hedley of Orewa.

Dinner Barry & CarolynTwo vice-presidents were elected – Dunedin’s Keith Beck, who also runs the PCF website, and long-serving Foundation treasurer Trevor Green, Auckland.

The new executive committee elected by secret ballot from 13 candidates will comprise Dene Ainsworth (Porirua), Ian Chapman (Nelson), Mark von Dadelszen (Havelock North), Nicholas Jack (Auckland) and Prostablog author Jim Tucker (Wellington).

After a surplus of $1.83 million in the financial year to March 31, 2008, the Foundation lost $136,688 in the last financial year.

The main reason was a severing of ties with the Australian-owned Movember fund-raising campaign, which gave last November’s takings to the Cancer Society and others rather than PCF. The 2007 Movember had helped PCF boost its income by more than $2 million.

No money came from fund-raising last year, although the Foundation made $424,672 from donations and memberships ($268,934), interest on investments ($148,255) and other sources.

Despite the loss of Movember (which criticised the PCF for not appearing to use the money it handed over), the Foundation is still in a strong financial position, with total equity of more than $2.5 million (compared with about $3 million the year before). It has most of its money conservatively invested with the ASB Bank.

AGMtoptableSome at the annual meeting were critical of the lack of detail in the balance sheet, but treasurer Trevor Green said the auditors passed the accounts and they were presented to the meeting in the form prepared by the organisation’s accountants.

President Barry gave an assurance than more detailed accounts would be made available as soon as possible. This had not happened in time for the annual meeting.

The auditors, WHK Gosling Chapman, who completed their audit two days before the annual meeting on July 25, made the following comments about the accounts:

Control over revenues from donations and membership income prior to being recorded is limited and there are no practical audit procedures to determine the effect of this limited control.

In this respect alone we have not obtained all the information and explanations that we have required.

In our opinion, except for the adjustments that might have been found to be necessary had we been able to obtain sufficient evidence concerning donations and membership income

  • proper accounting records have been kept by the foundation as far as appears from our examination of those records; and
  • the financial statements on pages 3 to 8 comply with generally accepted accounting practice; give a true and fair view of the financial position of the foundation as at 31 March, 2009 and the results of its operations for the year ended on that date.

AGMcrowd

No budget for the coming year was presented to the meeting.

Barry Young said in his annual report the PCF had had a “most interesting” year, but had emerged as a “more mature organisation better equipped to meet its future obligations”.

It had been affected by the recession, but conservative policies meant it was protected from losses on investments.

“Lower bank interest rates have been the cause of main concern and with commitments to projects (including research) reserves have been reduced.

“Care needs to be taken to maintain reserves at a level where they provide adequate return to enable the Foundation to fulfill the role now expected of it.”

The Foundation continued its financial support of a project seeking markers of biological behaviour in prostate cancer tumours, having given $153,000 over two years.

“Other applications for funding have been postponed until the financial situation clarifies,” he told the meeting.

The PCF funded a project in Palmerston North involving health checks for 100 men and the results of analysis were received two days before the meeting, not leaving enough time for him to absorb and relay them.

In answer to a question from the floor, he said the Foundation would be making submissions to the upcoming inquiry into prostate cancer screening by Parliament’s Health Select Committee. These were being prepared by the organisation’s medical committee in time for the submission deadline of August 21.

The PCF has embarked on a replacement fund-raising campaign called Blue September, which was outlined to the meeting by the NZ representatives of an Australian marketing company called MWC Media.

The representatives showed charts indicating that sponsors lined up for the campaign this year would donate about $150,000.

One, Watties, has agreed to produce a line of baked beans in cans coloured the foundation’s new blue.

Other ideas came forward from the floor of the meeting, including Lin Tucker’s suggestion the foundation should persuade a prophylactic company to make blue condoms.

The Blue September re-branding has so far cost the PCF $168,000.

The PCF has 329 paid-up members and active local branch organisations in Whangarei, North Harbour, South Auckland, Hamilton, Tauranga, New Plymouth, Gisborne, Hawkes Bay, Wairarapa, Mana, Otaki, Wellington, Nelson, Canterbury, Dunedin and Southland. An organiser has been found to set up branches in Auckland.

Early in the meeting, members saw brief extracts from the first two DVDs of a series on prostate cancer being made by veteran TV producer Robert Boyd-Bell. Featuring top urologists, the videos are being progressively posted on the Foundation’s website.

The meeting was followed by a dinner:

DinnerDene&Ans

ABOVE: Executive Committee member Dene Ainsworth (left) in serious discussion with immediate past Vice-President Ans Parder, Christchurch.

Dinner Ian Chapman

ABOVE: Ian Chapman, Nelson, who was re-elected to the executive committee.

Dinner Ian Morrieson

ABOVE: Doreen and Ian Morrison, who run the foundation’s branch in Mana north of Wellington.

DinnerGeneral

ABOVE: Prostablog blogger Jim Tucker (bald, at left) in conversation with Jan Ainsworth.

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PART 20 of My PC Adventure – see full story HERE>

Having prostate cancer could be a terribly lonely experience, if you let it.

Sounds ridiculous to say that, doesn’t it.

After all, prostate cancer is scarcely a rare disease. In fact, it seems like an epidemic when you start asking around. A lot of famous people seem to die from it.

On any given day there are millions of words written about it on the ‘net.

There is a fully-developed medical structure for dealing with it, and each year there is a well-publicised fund-raising campaign which persuades young men to grow awful moustaches for the cause.

So what’s with the “L” word?

Well, think on this.

If I’d just had a triple by-pass heart operation and did what I did today – climbed to the top of Wellington’s Mt Victoria – people would be saying “Hey, you’re looking fit and healthy. It obviously went well…” etc.

If it was a brain tumour I’d had removed, they would be complimenting me on my restored mental acuity (if I had, in fact, regained it, or had it in the first place).

But the prostate…you can’t invite people into the loo and show them how well you’re peeing.

And there are  those little question marks in people’s minds about manhood, continence and nappies. Does he have a wet patch down there? They can’t take a look, overtly. That would be like staring at a woman’s chest after she’s told you about her breast cancer operation.

Men have been the butt of cruel jokes about prostate problems for a long time, and traditionally they’ve kept discussions about it to spouses/partners, who must get thoroughly sick of the whole thing.

Friends and colleagues are wonderfully concerned and supportive, for a while, but who can blame them for moving on. Even close relatives show a reluctance to go into too much detail (why would they – they might be next?).

The prostate doesn’t exactly have the stigma of Aids or syphilis, but it isn’t something you can readily bring up at a party and hope to sustain dialogue.

It’s just too complicated. A heart transplant sounds easier…and consequently, easier to talk about.

The other problem is where to go to check on all the little hurdles and side issues that arise during recovery.

This is no indictment of the medical system, but once you’re seen to be healing (within a few days of surgery), you’re essentially on your own, unless something goes obviously wrong.

It’s one long wait, in silence. You can’t ring up the surgeon or your doctor every five minutes because you can’t remember what he/she said about such-and-such a development.

How long should there be blood in my urine? Should my boys be this swollen and this colour? And what’s incontinent as opposed to a little bit incontinent in certain circumstances? And how…you get the drift.

This is a long and probably tedious buildup to what I want to discuss next: the discussion group.

Whoa, I hear you say: why would I want to trust the advice of a bunch of fellow patients, who are probably just as unqualified as me?

Fair question. But take a look at these samples from a prostate cancer discussion group on the web and ask the question again (names changed to respect privacy).

First discussion is about PSA levels after surgery:

PHIL: Had RP in January, 2007, Gleason 7, negative margins, cancer (5% volume) contained to prostate. Had seven blood tests since the surgery, with PSA at undetectable levels. At my two year marker (March, 2009), I had a .28 PSA. It was recommended to see a radiation doctor for further treatment. I am presently in the process of gathering information to make a decision in what direction to take. I am 69 years old. I am open for any input.

ANDREW: (same day): What happened to you is the “usual”. PC more often than not, especially G-7 and up, develops microscopic mets very early, outside the Prostate. You might still have area confined disease, though. When my PSA started to “get up there”, I had a detailed biopsy before I made any moves. The results were negative…bad news…the “Horsie was out of the barn”. However, at least my urinary system was not under threat!

You had a different treatment than I did. Nevertheless, I’m not happy with the sudden rise of PSA from undetectable to .28 either. I would discuss this with my doctor. He might advise you to get one or two more PSA tests for comparison in establishing doubling time before making a move, but he probably will suggest an area biopsy somewhere down the road. If it is positive, that, in an important sense, is good news…you might qualify for salvage radiation. If the biopsy of the area is negative, you might want to use some ADT treatment for a couple of years and then come off for a while to see if you have a durable remission.

You are lucky you are 69. It is highly unlikely you will die of prostate cancer! It just looks like you will be obliged to manage your situation as you would manage any chronic condition.

ALAN: (17 days later):  Check out articles by Dr Snuffy Myers and the work they are doing at the Dattoli Center in Florida on radiation therapy for high risk cancers, even after surgery.

PERCY: (same day):  First thing, make sure you got an accurate PSA, same hospital or office, same lab, etc. Also, sometimes it is recommended that you have another in 3 months. Second, regardless of opinions, make sure you get a second or third, to get a good look at what several experts are saying. Some teaching hospitals have a medical staffing on second opinion case where all the oncology Docs make a recommendation. I would for sure use somebody like Dr. Snuffy Myers as recommended by Alan above. He is the best. Keep us posted and up to date on what you do so we are abreast of what’s going on. Keep you in our thoughts.

TERENCE: (a month later): I am 63 and had a RP in 2002. PSA was 7.5 with Gleason of 7. After 2 years, PSA started rising. Had radiation to prostate bed and PSA returned to undetectable. In 2009, PSA was again detectable and rose to a high of 0.85 and has now leveled off at 0.70 for the last few months. Continuing to watch PSA was having it checked about every 6 weeks, but now every three months since it is staying at 0.70.

PHIL: (same day): I decided to get another opinion from a different hospital and Doctor here in the Portland, Oregon: Oregon Health, Sciences University. They recommended I get another blood test and follow up from there. I just received the results: my PSA dropped to .10. They asked me to wait another 3 months and do another blood test. Thanks for all your concerns and prayers.

ANDREW again (same day): It looks like you dodged a bullet to me! Really, those tests can be off and your approach was absolutely correct. Remember, a small amount of healthy prostate tissue sometimes remains after surgery…that tissue obviously produces PSA. If your post-surgical PSA…as accurately measured, shows an actual decline, you have a very good chance of being in the clear! Thanks for keeping us updated!

SITE ADMINISTRATOR: (same day): Hey Phil…That’s good news. Keep the microscope focused on the numbers for a while, just in case, but there’s a great lesson here for everyone – don’t over-react to small changes in the PSA level. It happens.

Second discussion is about the immediate after-effects of surgery:

BILL: Well, the surgery went off w/o a hitch Monday afternoon. Returned home last night. Couldn’t believe my eyes when I stepped on the scale, + 10 lbs! Some minor swelling and bloating, but feeling fine. Even the cath (catheter) isn’t as bad as I thought it would be 🙂 Dr says all went well and was able to save both nerves. However….my palpable “camel hump” concerned him. Will meet 10 days hopefully for cath removal and keep our fingers crossed for a promising path report. Till then…

JED: Great job Bill. Now that is behind you and the healing begins.

BRIAN:  I’m sure the swelling will disappear, as mine did over a couple of weeks. One advantage was I couldn’t look down and see my scar. I’ve found I’ve actually lost about 4 kilograms in the long run (op was a month ago).

BILL:  HELP!! I just noticed that my penis and scrotum are now turning black and blue. Is this normal post op? Feeling fine otherwise. Don’t recall reading or hearing about this. Thanks…

JOHN:  Obviously time to make a telephone call to your urologist rather than rely on “what I did” from other men.

BOB:  Go to the Dr ASAP.

BRIAN:  Good advice. Mine swelled up, but there was no black and blue bruising.

JEFF:  Bill…ask your Dr. After I had mine it shocked me to see my scrotum the size of a small grapefruit!! HAHA…it sounds funny now. I did notice some black and blue there also. Good idea to check it out though.

TERRY:  I can relate to the grapefruit analogy. I also recall discoloration, but don’t know that I would call it black & blue. But I would suspect that it’s in the realm of normal, considering the trauma inflicted.

JEFF:  You’re right, Terry…it wasn’t exactly black and blue, but it was discolored. The size shocked me, they didn’t warn me, so I called my Dr. It was from all the trauma.

Four days later:

ALBERT:  So, Bill, how are you doing now? Please tell us. My surgery is scheduled [next month].

BILL:  Thanks for asking, Albert. Everything seems ok…for now. Meeting w/dr [soon] for path report and (hopefully) cath removal 🙂 My wife is nervous and struggles sometimes. She’s just scared and it seems to get the best of her sometimes. I just try to comfort her and tell her it is what it is. One step (report) at a time. Sure, I’ll be pleasantly surprised if the path report is promising. But the reality of this program is it’s something we will have to manage for the rest of my years. That’s just the way it is and I’ve accepted it. Will update later this week. Sounds like you have a bit of a wait until your surgery. I didn’t catch much of your info other than it appears you’re on top of things. Sounds like we may have similar situations…50-something, 2nd marriage? Any way…good luck & enjoy yourself. It really hasn’t been too bad.

The benefits of this kind of exchange are obvious: lonely patients getting into contact with those who have experienced something similar.

The dangers are obvious, as well: unqualified people passing on their inexpert advice to others. But in the first discussion, note the affirming interpretation from the site administrator, who in this case has considerable expertise available to him.

In the second discussion, see how quickly contributors urged Bill to go and see his doctor. Sometimes, that’s all that’s needed for someone to realise they’re not being neurotic.

The other plus in this kind of forum is the warmth that comes through from fellow patients. Medical practitioners can exude the same compassion, of course, but are necessarily constrained by their professional status.

Nothing quite like reading someone else’s account of something that also happened to you. The sense of affirmation (and relief) is palpable.

NEXT:  End of the golden weather.

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