Home Prostate / Prostate Cancer Facing up to a deadly diagnosis: The men navigating prostate cancer

Facing up to a deadly diagnosis: The men navigating prostate cancer

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In 2016 Graham Clouston was given three to five years to live.

The five years are up in July.

Sitting in the lounge of his New Plymouth home looking out over the Waiwhakaiho River, he looks the picture of health.

He puts it down to eating well, exercise and meditation – mind, body, medicine.

In 2016, Clouston, who has a history of kidney stones, went to the doctor thinking history was repeating itself.

The doctor agreed, but said he’d check Clouston’s prostate while he was there.

‘’So, he did the DRE, finger up the bum thing,’’ Clouston says. ‘’A Digit Rectal Examination – sounds high tech. It’s not. Then he said it’s not too enlarged but to do a PSA check and that came back at 250.’’

It is supposed to be no more than four.

Clouston had prostate cancer.

‘’I’d never been checked, so when I was diagnosed at age 66 it was a complete surprise to me.’’

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By the time he had gone through the process of an MRI, needle biopsy and other procedures and was referred to an oncologist his PSA was 444.

In two months he went from feeling well and working in the insurance business to being told he had a terminal illness. All treatment would be palliative.

It was ‘’all over rover,’’ he says.

He’s not cured. He still has two small tumours that are untreatable. But the terminal diagnoses has ‘’gone away’’ and he has a good quality of life.

‘’My current position is I am off medication and my PSA is less than 1.’’

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Prostate cancer kills 600 men every year in New Zealand – about the same as the number of women killed by breast cancer (File Photo)

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Prostate cancer kills 600 men every year in New Zealand – about the same as the number of women killed by breast cancer (File Photo)

Now Clouston’s business is getting the word out – men, get checked regularly.

‘’I’d have been a bloody site better off – technical term – if I had been tested earlier.’’

In New Zealand, prostate cancer is the most common cancer in men, with more than 3500 men getting the disease and more than 600 deaths each year – about the same as the number of women lost to breast cancer.

The chance of developing it increases with age. The risk of getting prostate cancer by the age of 75 is one in seven men, by age 85 it is one in five.

And if a man has a male relative who has had prostate cancer they are twice as likely to develop it themselves.

The Prostate Cancer Foundation recommends men with a family history of prostate cancer should get tested from age 40. Every one else should get tested once they turn 50.

But these messages aren’t getting out, especially to Māori.

Māori are approximately twice as likely to die following a diagnosis of prostate cancer than non-Māori, because it is often found too late to cure.

AUT associate professor Dr Jacquie Kidd, who has tribal affiliations to Ngāpuhi, said health messages around prostate cancer were not relating to Māori.

“Institutionalised racism is a problem in terms of our health. Public health messages just don’t register.’’

Kidd was one of the authors of a study Inequalities between Māori and non-Māori men with prostate cancer in Aotearoa New Zealand that found ‘’while Māori are less likely to be diagnosed with prostate cancer, they are significantly more likely to die from this disease. Most of the disparity is due to the later stage at diagnosis for Māori men and ethnicity-based differences in treatment.’’

For prostate cancer they use opportunistic screening, she says. A man will go to his GP who notices his patient is about the right age and offers them prostate screening.

AUT Associate professor Jacquie Kidd says Māori men are not offered the same range of treatments as non-Māori.

Supplied

AUT Associate professor Jacquie Kidd says Māori men are not offered the same range of treatments as non-Māori.

But they’re less likely to offer that to Māori men, which she puts down to ‘’blatant racism’’.

“We have the evidence that opportunistic screening is not happening for Māori men, so when they’re first diagnosed the cancer is more likely to be invasive – out of the prostate.’’

And whānau think it’s not safe to access health services.

And when they do, they’re not offered the same range of treatments as non-Māori, she says.

‘’Its something a lot of GPs are aware of and trying to find ways of overcoming that. Others are not interested.

‘’Researchers like me are trying to raise awareness. It’s just really hard.’’

And from a cultural perspective Māori men don’t want to talk about these things, Kidd says.

This is something that is common across the board. While women attend support groups men aren’t into them.

Some men with prostate cancer can have issues such as erectile dysfunction or incontinence and sitting around talking about wearing pads isn’t going to happen, Taranaki District Health Board (TDHB) urology oncology coordinator Jenny Corban says.

She used to encourage her patients to go to a support group. At one time she had got the number attending up to four.

So, Corban came up with a better idea.

It began with a growing awareness of the amount of anxiety and depression related to treatments for prostate cancer.

Urology and Oncology co-ordinator Jenny Corban’s idea of replacing traditional support groups with exercise groups is taking off around the country.

SIMON O’CONNOR/Stuff

Urology and Oncology co-ordinator Jenny Corban’s idea of replacing traditional support groups with exercise groups is taking off around the country.

She read studies, including one undertaken in the United Kingdom, which found suicide in the general population was 10 per 100,000 people. All-cancer suicide was 30 per 100,000, but for prostate cancer patients it was 52 suicides per 100,000 people.

Those statistics really bothered Corban.

‘’I’ve rung the crisis team for a patient before.’’

Then she found an interesting article on the Exercise is Medicine Australia website, she says.

‘’It says here ‘there is now irrefutable evidence from large studies that regular exercise after a cancer diagnoses will actually increase cancer survival rates by 50 to 60 per cent’. And it says ‘’One study reported reduced prostate cancer incidence by 70 per cent for advanced forms and in older men if performing more than three hours of vigorous exercise per week.’

‘’And I’m like why is no one talking about this? Why aren’t we telling our patients about this? Why didn’t I know this?’’

So, out went the support group and in came an exercise group.

The Taranaki branch of the Cancer Society came on board, and now they have several hundred on the men’s support group contact list, she says.

The idea was it needed to be group exercise, because it’s really hard to motivate yourself, and then there’s the banter, it’s a bit fun, and people are more likely to turn up, Corban says.

‘’The premise was after the group exercise they’d have coffee together and that’s where the magic happens. So, then you’ve got a bunch of men sitting in a café having coffee, and they might not be talking about prostate cancer, but they know everyone at the table is experiencing similar things to them.’’

The feedback has been amazing. And Corban has had wives of some of the men stop her in the street and say thanks for giving them their husbands back.

One exercise group climbed Taranaki Maunga last month.

After Corban spoke at a Prostate Cancer Foundation event in 2018 word got out and now the Prostate Cancer Foundation, inspired by what is happening in Taranaki, is helping set up exercise groups around the country.

Men who have a family history of prostate cancer should start getting checked from age 40. (File photo)

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Men who have a family history of prostate cancer should start getting checked from age 40. (File photo)

And Corban has been invited to be the clinical expert on the foundation’s board.

In Taranaki the Cancer Society funds 12 weeks at Rampage Gym, and then they can get a membership for $10.

Trainer Kurt Lightfoot is ‘’fabulous,’’ Corban says. ‘’He goes way up and beyond.’’

Exercise helps from every angle – mentally, if the heart and lungs work really well and the blood streams working really well, and they’re pumping good oxygenated blood throughout their body, they’re well, they’re happy, sleeping well.

It helps the treatments work better. One side effect of all the treatments is fatigue and the best way to counteract fatigue is exercise.

‘’But we’re not saying it’s going to cure your cancer. It’s about living well in spite of cancer.’’

Which is what Maurice Bevin, 67, is working hard at.

Maurice Bevin wants to get the message out that men need to get checked for prostate cancer.

Supplied

Maurice Bevin wants to get the message out that men need to get checked for prostate cancer.

Bevin, who is currently in Mexico visiting his brother, was also told by his doctor he had three to five years left.

‘’I said bugger off. He said I’ll give you seven. I still told him to bugger off.’’

He has worked in the oil industry all his life and was working in North Sea six months on six months travelling.

Bevin was diagnosed while he was in Spain in 2019.

‘’It was a big shock to me.’’

Eventually, Bevin flew back to New Plymouth and was given a choice – chemotherapy and no quality of life. Or he could take tablets, Zytiga, at a cost of $5000 a month. He chose the pills.

‘’Then it was lockdown. Then they started playing havoc with my liver. My PSA level was down, so the doctor said keep taking hormone injections and stop taking the tablets. My PSA level 0.0008 which is excellent.’’

He has side effects a lot of hot flushes, mood swings, which he tries to deal with, along with a few other minor issues.

Like Clouston, he eats nutritious food, keeps a positive outlook and keeps fit, walking about four hours a day.

After he was first diagnosed Bevin went back to work in the North Sea and decided to have a chat to his colleagues. He gave a 30-minute presentation telling his story. Then he broke down and cried.

‘’It was pretty tough,’’ he says.

He had never shared anything that personal before. He gave the same talk to the night shift, and a while later he spoke to a group of guys he didn’t know. They gave him a standing ovation.

If he gets a medical clearance he will go back to work in the North Sea and plans to walk from John o’ Groats to Land’s End, in the UK, to raise awareness.

‘’No one is saying anything about it (prostate cancer). We’ve got to make men more aware. Blokes don’t like to talk about it.’’

https://www.stuff.co.nz/national/health/124492796/facing-up-to-a-deadly-diagnosis-the-men-navigating-prostate-cancer

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