Webber is a case in point. Despite his high level of education and his position, it didn’t enter his mind that his problem might be related to cancer. And he couldn’t tell the system was failing him.
Now he is in “survivorship”, which is the focus of the second initiative. This is a push to create a new way of managing survival that extends beyond traditional care.
In 2011, Dr Webber was chief economist at Qantas when the company decided to sent its top 100 executives for a full medical check-up.
While he was told he was in exceptional good health, his CEO, Alan Joyce, was not so fortunate. He was diagnosed with prostate cancer, about which he has since been very open.
Webber moved on from Qantas and set up Airline Intelligence and Research, a consultancy that houses one of the biggest private aviation operational and financial databases in the world.
He also wrote for The Sydney Morning Herald and, as an associate professor, taught on the MBA program at Sydney University’s Business School.
Webber had been to the doctor perhaps a dozen times in his whole life and never thought about his health again, until November 2018, when he realised he was living with a waterworks problem.
He was relieving himself much more often, and volumes were notably low, leaving him with a sense of incomplete emptying.
“I’d put on weight and I thought those few kilos were probably putting pressure on my bladder. So, I started taking them off. It didn’t help and by January 2019, I thought I’d better do something about it.”
With that, he began falling towards a prostate cancer diagnosis, missing the traditional cautions that can catch men before their cancer gets to an advanced stage.
A family history of prostate or related cancers is a warning sign, as is age. Webber was relatively young and had no such history. His PSA was low, his scans missed the cancer and when his GP gave him a digital rectal examination, he missed it too.
“What happened to me reminds me of how a sequence of low probability events can generate a fatal air crash, “he says.
At the GP’s behest, in January 2019, Webber had a series of tests but there was nothing to see.
“The results showed my prostate was a bit enlarged, which was normal for a man of 51. My PSA was low and although my kidney function was a little outside the normal range, the GP said it was nothing to worry about. I should go home and the problem would sort itself out.”
“The PSA is not foolproof, all my medical people missed it initially,” says Webber.
Rather than sorting itself out, his problem persisted on and off. As he was busy and travelling, he lived with it.
“But it took a turn for the worst in Istanbul in March. During the day, the urgency to pee every half an hour was extreme and the volumes were small.
“Back in Australia, I needed a review but I didn’t find the time. I had a business trip to Bangkok in May and in June my wife was overseas and I had to look after the kids during school holidays.
“My peeing situation deteriorated dramatically and sometimes I was up eight times at night. I also couldn’t ejaculate. It just dried up and that really freaked me out because I was pretty good at doing it before.
“And I was oozing weird stuff out of my backside which also caused massive anxiety. Eventually, to pee I had to contort my body and push as hard as I could to get out a drop.”
For the second time, he’d left things too long – which is why he blames only himself.
By the time he got to the GP in July, there was a swelling along his pelvic bone and down the left side of his groin. More tests were ordered.
“The woman doing the ultrasound said I had a blockage down my left side, likely my prostate, and that I should run back to the doctor, not walk.
“In response, the GP hesitantly performed the digital exam but he couldn’t find anything. After three weeks of back and forth with tests, he finally sent me to a urologist because he was completely baffled.
“It was early August and the first thing the urologist did was digital exam. Immediately, he said there was something abnormal about my prostate.
“This was a lesson. I discovered it is important to have this exam done by someone who does many of them.”
A prostate biopsy followed and by mid-August, he knew he had prostate cancer. That men with this cancer generally have a 95 per cent chance of surviving for five years, was reassuring.
But there was more. He needed stents, small plastic tubes, to keep open the channels that allow urine to flow from the kidneys to the bladder. He also needed CT and MRI scans to see if the cancer had spread.
A short while later he got the call. There had been aggressive spread and he would need “full body treatment”, code for chemotherapy.
The next morning, he and his wife, Cecilia, met the urologist and the radiation oncologist. They learned his cancer had spread to his lymph system, through his pelvis, bladder, pelvic bones and into his lower spine.
“Your PSA should have been screaming like there is no tomorrow,” the radiation oncologist said to him, before adding “and don’t Google this mate, what you’ve got is probably one of a kind.”
They also learned that when the new and old scans were compared, the disease had been visible earlier. “My urologist insisted the company rewrite its report for the January 2019 results to reflect this.”
The hard moment came when they heard that, with stage IV, the likelihood of surviving five years was 30 per cent.
“I broke down emotionally. I felt I’d been hit by a Mack truck. After the appointment, we sat in the car crying. It was awful.
“But at least we knew they had consulted internationally and had a plan of attack.”
For Webber, stage one of the plan was anti-hormone treatment to turn off his testosterone. “It was like going through menopause. I had hot flushes and a private area that basically shrivelled up – not great for my manhood but for me survival was utmost on my mind.”
Next came chemotherapy, less daunting than he expected. “I went to a building nearby, sat on a chair with a view of Sydney’s CBD and had a drip in my arm. It involved a 90-minute treatment, six times every three weeks, and was over by Christmas.”
“I was told there was no sign of cancer but I was still dealing with nerve damage, mouth ulcers and other side-effects.
“Today, my hair has grown back grey and although breathing still troubles me, I’m on my way back to normality.
“The most important pieces of intelligence I received were to stay in touch with my GP and seek advice from a mental health specialist.
“A stage IV cancer diagnosis is nearly impossible to get through without mental health help – and I was fortunate enough to have my absolutely amazing wife by my side.”
Men’s health care has specific challenges that are seldom addressed in mainstream health care delivery. While much of the attention on prostate cancer has been on diagnosis and treatment, little has been directed to life afterwards.
This year, the PCFA commissioned a multi-disciplinary panel of experts to analyse survivorship in Australian men with prostate cancer.
The panel concluded the focus was too narrowly concentrated on clinical care and that the framework needed to be extended.
Its findings, published in the BJUI, identified areas for action which cumulatively, it says, could make a measurable difference.
These included improving men’s personal agency and the communication between them and their doctors. There should be more shared management and increased access to care. Technology could be improved to access care and more specialist urology comunity nurses should be trained.
The panel laid out what is necessary for step change.