Why are cancer patients still being LEFT IN LIMBO?
It’s become the untold scandal of the Covid crisis — how as many as 36,000 lives could be lost because of delays in the diagnosis and treatment of cancer. But as virus deaths plummet and pressure on the NHS eases...
THREE days into lockdown, having learned that he had a growth in his prostate, Chris Durcan waited anxiously for a letter from the hospital telling him what the next steps would be. ‘An MRI scan on March 23 — the day lockdown was announced — had shown the growth measured 2cm,’ says Chris, 61, a technical support officer with the National Crime Agency, who lives in Birmingham with his wife Alison, 56, a secretary.
‘I was extremely worried as I have a family history of prostate cancer — my younger brother, Tom, had his prostate removed a few years ago aged just 49 because he had an aggressive type of the disease. And my father, grandfather and uncle all had prostate cancer.’
When the letter arrived in April, Chris was devastated to read that the growth was ‘suggestive of a high-grade tumour’ and he needed a biopsy to confirm the cancer and suitable treatment.
‘This was all bad news — but what was worse was it said I would have to wait four months for the procedure as no biopsies were being done due to Covid,’ says Chris.
‘I was worried my cancer could spread and become incurable. I was so anxious I asked my GP for pills, as I couldn’t sleep at night.’
Although Chris had concerns about catching Covid, he feared the risks from delaying treatment if he did have cancer were greater than any posed by the virus.
He had been sent for tests initially because of high readings on a routine PSA test (which measures a protein called prostate-specific antigen) ordered by his GP in February. High PSA levels can be a sign of prostate cancer.
By May, having heard nothing, he went back to his GP, who wrote expressing concern to the consultant, but didn’t hear back.
‘Then I heard the hospital had restarted doing elective [planned] surgery — my brother-in-law had a knee operation, but they were still not doing cancer biopsies, which I found unbelievable given the urgency for patients,’ says Chris.
‘ My consultant eventually phoned me and said other patients in my position were considering “going private” as a way of moving their case along.
‘I got angry as I felt it was unfair and wrote to people in authority, including my MP and local media, to highlight the delays.’
Chris’s refusal to just sit and wait may have saved his life. After his story was highlighted on regional TV at the end of May, a consultant at another hospital got in touch and suggested his GP refer him to an NHS fast-track service at the Royal Marsden Hospital, London.
‘I was referred at the beginning of June, had another MRI in London on June 9 , a biopsy eight days later and got the results a week after that,’ says Chris.
HIS CANCER was confirmed to be aggressive and Chris underwent a radical prostatectomy — removal of the prostate gland — in August.
‘If I’d had to wait four months for a biopsy, it could have been a very different story — the cancer could have spread and become incurable.’
Chris’s story reflects a deeply worrying picture for patients with all types of cancer (see boxes), with delays in diagnosis and treatment that could cost from 7,000 to 36,000 lives, according to DATACAN, a research hub for cancer.
Meanwhile, a recent study from the London School of Hygiene and Tropical Medicine predicts that delays in diagnosis that began during lockdown for four cancers — breast, colorectal, lung and oesophageal, will lead to 3,500 avoidable deaths by 2025.
When it comes to urological cancers — which include prostate, bladder, penile and kidney — urgent referrals have dropped by half in england (49.5 per cent) compared with the same April to July period last year, according to Prostate Cancer UK.
The charity estimates there have been 27,000 fewer patients referred than expected since lockdown began in March this year. On this basis, as many as 3,500 men with prostate cancer may be diagnosed too late to be ‘cured’ this year.
PROSTATE cancer is the UK’s biggest cancer killer of men, with more than 11,000 men dying every year. One in eight men will develop it, and 20 per cent of tumours are high grade and aggressive. A study published by University College London in April found that several hospitals in england and Northern Ireland have reported an average 60 per cent drop in patients attending chemotherapy appointments (for all types of cancer) during the pandemic.
Laura James, a specialist prostate cancer nurse who works for Prostate Cancer UK’s helpline, confirms they have had many calls about delays in diagnostic tests, surveillance or treatment.
‘Chemotherapy stopped because it was viewed as too risky, as it would lower immunity,’ she says. ‘Men waiting for surgery or radiotherapy have been put on hormone treatment to stop the cancer growing while they wait, and we’ve had to reassure them this will not affect their survival chances.
‘Clinical trials also paused — the specialist nurses who ran the trials were redeployed to Covid wards — and that has caused great distress, too, as this destroys hope for some men with end- stage disease because being on a drug trial can extend life.’
Like Chris, Kevin Cooke, 67, a retired physicist, faced months of delay. Had he not taken matters into his own hands, he might have faced a different outcome.
Kevin, who lives near Tenbury Wells, Worcestershire, with his wife, Alison, 67, a retired nurse, had been referred for further investigations in late February after a test found he had raised PSA levels.
An MRI on March 15 found a ‘suspicious mass’ and he was told he would need a biopsy. He had to wait a further six weeks — until the end of May — just for that.
The results confirmed he had cancer. ‘I was told that some of the cancer cells were growing at a moderately quick rate,’ says Kevin. ‘I worried the cancer might spread and wanted the tumour removed.’
Surgery isn’t the only treatment for prostate cancer. Another option for slower- growing tumours is active surveillance, where PSA levels are checked regularly with blood tests; hormone therapies can be used to starve the cancer of testosterone to stop its growth, or radiotherapy may be offered.
‘My surgeon advised that I could have my prostate removed or just have regular PSA tests and see what happened,’ says Kevin. ‘I wanted surgery.
‘When it got to mid-August, nearly three months after my diagnosis, and I still hadn’t heard anything, I was getting concerned.’
Then, his consultant warned him he might have to wait until
November due to a backlog of cases. Kevin ended up paying just under £17,000 to have the operation privately on September 5 — by the same surgeon he saw on the NHS.
‘After the operation, the surgeon told me the cancer had been on the verge of breaking out from the prostate,’ says Kevin. ‘Had i waited until November for the operation on the NHS, it could have spread.’
Ben Challacombe, a consultant urological surgeon at Guy’s and St thomas’ NHS Foundation trust in London, says lockdown meant doctors had to make difficult decisions.
‘We’d hold meetings and say: “We’ve got two slots — who is going to get them?”,’ he says. ‘Decisions we made were on the basis of how bad the cancer was and their chance of surviving Covid.
‘Many of us felt uncomfortable not being able to deliver cancer treatment to patients we regarded as urgent cases.’
He says patients whose investigations were stopped halfway through their diagnosis — as happened with Chris — had been some of the worst affected.
‘We stopped biopsies and Mris for around four to six weeks in big centres, which was a nightmare for the men caught in the middle.’
other prostate cancer patients had chemotherapy stopped and were put on hormone treatments such as abiraterone (Zytiga) to keep their cancer under control.
‘these drugs put the cancer to sleep for up to three years — but the side-effects can be miserable, as it’s basically chemical castration,’ says Mr Challacombe.
`He wants to emphasise, however, that hospitals are now open for biopsies and Mris, ‘but the big worry is that we are not seeing as many patients coming through’.
the reasons for this, he says, are partly due to men being too scared of catching Covid to go to a Gp surgery or hospital about troubling symptoms, but also because Gps are giving fewer routine checks.
‘A lot of prostate cancer cases are picked up where a patient comes about one problem and ends up being tested for a number of things,’ says Mr Challacombe. ‘people seem to be seeing their Gps only for acute symptoms.
‘We’d normally see 20 patients a week, referred by Gps with raised pSA levels, and now it’s ten.’
He adds: ‘the impact of this could go on for years — there will be men out there with disease who have not come forward. We need to be seeing these people otherwise we could be sitting on a timebomb — my message is: “please see your Gp if you are concerned”.
‘ Not only that but if their diagnosis and treatment were delayed it could affect their long-term survival.’
the message needs to get to men that diagnostic services are up and running again, adds professor Frank Chinegwundoh, a consultant urological surgeon at Bart’s Health London. ‘We have put on extra capacity to deal with people who were waiting.
‘For men who delayed having radiotherapy, we are now delivering their treatment in 20 appointments of higher doses rather than the usual 37 appointments.
‘We are also setting up Covid-free hospitals for cancer patients — hubs in each local area [hospitals which won’t treat Covid patients] and they will be able to continue treating cancer patients in a second wave so treatments will not have to stop,’ explains professor Chinegwundoh. ‘We are much better prepared this time.’
Heather Blake, director of support and influencing at prostate Cancer UK, says anyone at higher risk — men over 50, but also men from Caribbean or African backgrounds (who have a higher risk) and those with a family history of prostate cancer — should ask their Gp for a pSA blood test even if they have no symptoms.
‘these men simply cannot afford to put it off until things have returned to normal,’ she says. ‘Having a pSA test is important, as prostate cancer doesn’t have symptoms at an early stage.’
DESPITE the anguish and problems they experienced, in some ways both Chris and Kevin have been the lucky ones.
Mary Smith, associate legal director at Novum Law’s Bristol office and an expert on patient safety issues, says she is helping several prostate cancer patients who are considering taking legal action.
‘in cancer care across the board, we are hearing from many patients who’ve experienced difficulties accessing diagnostic tests and treatment due to Covid- 19 disruption. For men with advanced or aggressive prostate cancer, delay could mean the difference between life and death.’
professor Chinegwundoh adds: ‘it is too early to say whether there will be more of these late- stage patients because of the lockdown,’ he says. ‘We won’t know for a year until the statistics are published.’