Prostate cancer: ‘When you hear ‘inoperable’, your world falls apart. But soon I realised that didn’t mean terminal’

About 4,000 men in the State are diagnosed with the cancer each year. Although it is often very treatable, the lack of symptoms means it can go undetected for a long time

Phelim Warren, from Tallaght, Dublin, says he had no symptoms when he was diagnosed with prostate cancer. Photograph: Nick Bradshaw
Phelim Warren, from Tallaght, Dublin, says he had no symptoms when he was diagnosed with prostate cancer. Photograph: Nick Bradshaw

Tallaght man Phelim Warren knows all about Gleason scores, the measure which tells you how prostate cancerous cells look compared with normal cells.

Former US president Joe Biden (82) was given a Gleason score of nine when his office announced a week ago that his diagnosis of prostate cancer was deemed to be an aggressive type, having already spread to the bone.

When prostate cancer spreads to other parts of the body, it often spreads to the bones. Metastasised cancer is much harder to treat than localised cancer because it can be hard for drugs to reach all the tumours and completely root out the disease. However, when prostate cancers need hormones to grow, as in Biden’s case, they can be susceptible to treatment that deprives the tumours of hormones.

“Joe is a fighter – and I know he will face this challenge with the same strength, resilience and optimism that have always defined his life and leadership,” said the former US vice-president Kamala Harris following news of his diagnosis. Biden’s health was a dominant concern among voters during his time as president.

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In Tallaght, Warren was also given a Gleason score of nine following a biopsy in August 2023, which confirmed earlier suspicions – a high score on a Prostate-Specific Antigen (PSA) test and lesions near his prostate seen on an MRI scan- that he might have prostate cancer. The Gleason score will usually be described using a number from six to 10, with nine and 10 considered high-grade and often associated with more aggressive cancer.

“I was diagnosed six days after my 57th birthday. I had no symptoms whatsoever: no pain, no bladder or bowel issues,” says Warren, who had taken early retirement from the civil service in 2022 to look after his wife, Louise. She has reduced mobility, and is affected by fibromyalgia and functional neurological disorder (FND).

Warren says that the initial diagnosis terrified him – particularly at his relatively young age – but when he discovered that his cancer was treatable, his view changed.

“When you hear ‘inoperable’ – as my cancer was because, it had spread to the lymph nodes in the pelvis – your world falls apart. But, soon I realised inoperable didn’t mean terminal,” he says.

Warren feels sympathy for Biden and finds some negative social media comments following the former US president’s diagnosis highly distasteful. “People celebrating Biden’s seriously bad cancer diagnosis or thinking he deserves it, is shameful, abhorrent, disgusting and unforgivable,” he says.

Biden’s prostate cancer was diagnosed following urinary symptoms and the discovery of a prostate nodule. However, his office said his cancer was deemed to be hormone-sensitive, which allows for effective management.

Joe Biden and his wife Dr Jill Biden in a post to X last week, when he said: 'Cancer touches us all'
Joe Biden and his wife Dr Jill Biden in a post to X last week, when he said: 'Cancer touches us all'

In 2022 Biden made a “cancer moon shot” one of his administration’s priorities, with the goal of halving the cancer death rate over the next 25 years. The initiative was a continuation of his work as vice-president to address a disease that had killed his eldest son, Beau, who died of brain cancer in 2015.

Prostate cancer is the most common form of cancer affecting men in Ireland, with about 4,000 men diagnosed with it each year.

Dr Lynda Corrigan, medical oncologist at Tallaght University Hospital, says: “The difficulty about prostate cancer is that the narrative in the community is that ‘You won’t die from it, you’ll die with it’. This is unhelpful for men who are diagnosed with advanced-stage prostate cancer.”

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About 10 per cent of men with prostate cancer in Ireland are diagnosed when the cancer is at an advanced stage, in that it has moved beyond the prostate gland, often to the bone. “Prostate cancer is a life-changing diagnosis and this narrative minimises their condition and can affect the support men with advanced stage disease get,” says Dr Corrigan.

Superior detection with more refined diagnostic equipment, and an ageing population, means that there is a growing incidence of prostate diagnosis in Ireland. The fact that GPs can refer patients to rapid-access prostate clinics in all the main cancer-treating hospitals following high levels of PSA means that there is a clear pathway for diagnosis and treatment.

However, urologist Louise McLoughlin in St James’s Hospital, Dublin, says that “bottlenecks” in getting MRI scans can delay diagnosis. “Men can wait up to six months for an MRI scan, which is key to finding out if the cancer is early-stage disease confined to the prostate or later-stage disease,” she says.

Surgery to remove the prostate gland or radiotherapy (external beam radiotherapy or brachytherapy, in which radioactive beads are implanted in the prostate) is the standard treatment for early stage prostate cancer. Those whose cancer is already more advanced are treated with hormone therapies to stop the disease from progressing.

You can feel perfectly healthy and have advanced-stage prostate cancer

—  Louise McLoughlin

Warren, positive by nature, took on board that although surgery was not an option for him because he had advanced prostate cancer, there was an effective treatment regime he could undergo.

In October 2023 he received the first of four annual hormone therapy injections. These slow-release drugs stop the production of testosterone in the testicles, preventing the cancer from progressing further. He was also prescribed daily hormone tablets to supplement the work of the injections.

“The tablets can have quite severe side effects and cause issues with liver, heart and blood pressure, but thankfully this didn’t happen to me,” says Warren, who writes a blog to document his cancer journey.

When he shared his story on social media and on his blog, Warren was overwhelmed by the messages of support he received. “People were incredible, and I know that at least 15-20 people have said to me that because of reading about my situation, they took it upon themselves to have their bloods done. In more than a few cases, they discovered that they did have issues, so sharing my story has been very effective in that regard.”

He has found speaking to others with a cancer diagnosis helpful, and is also trying to maintain a positive attitude. “Your positive mental attitude is key in this and I‘m a firm believer in that,” he says.

He says that the main side effect he has experienced is fatigue. “I mind my energy levels and I don’t let cancer stop what I enjoy doing. I look after my wife, I do my music, my football, walk the dog and mind the grandchildren and if I feel tired in the evening, I‘ll go to bed,” he says.

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Other common side effects of hormone therapy are hot flushes, erectile dysfunction, weight gain, low mood and reduced bone density, leading to osteoporosis.

In April, Warren got the good news that his PSA levels were not detectable, meaning the cancer had effectively been stopped in its tracks. “I won’t need any further scans once the PSA levels remain low. I now feel joy, elation, relief and gratitude,” he says.

He is passionate about encouraging all men over 50 to have annual blood tests to check their PSA levels.

Warren cites the example of British Olympic cycling champion Chris Hoy (49), who was diagnosed with terminal prostate cancer in September 2023, as a wake-up call to other men. Hoy told reporters that he had first attributed the pain in his shoulder to working out in the gym.

“I assumed it was going to be tendonitis or something, and it was just going to be lay off weights or lay off cycling for a wee while and get some treatment and it’ll be fine,” Hoy told BBC Sport.

Hoy’s openness resulted in a near eight-fold increase in NHS searches for prostate cancer symptoms over the following days. New, persistent or worsening urinary symptoms (needing to go the toilet urgently or more often), unexpected weight loss or bone pain are symptoms that men should get check out with your GP.

Warren says: “A lot of men refuse to the go the doctor even when they don’t feel well. We bring our cars for NCTs every year. Do it for your body too. Having your blood tested is a way into knowing more about your health.”

The problem is that although prostate cancer is now more like a treatable chronic disease, the lack of symptoms means it can go undetected for a long time. Dr McLoughlin says: “We still see people presenting with advanced disease. You can feel perfectly healthy and have advanced-stage prostate cancer.”

Ireland is one of the countries involved in the EU prostate cancer screening pilot study. The research project, PRAISE-U is looking at whether organised screening programmes could be a feasible and cost-effective way to increase the early detection of prostate cancer across Europe.

Prof Ray McDermott, National Cancer Control lead for prostate cancer in Ireland, says that screening for prostate cancer should only be introduced if there is a reliable test that picks up most cancers early and doesn’t miss others.

“This test is a few years away yet and it won’t be PSA,” he adds.