The cancer backlog: ‘My surgeon told me another delay and it could have been a different story’

The pandemic has been especially tough on cancer patients. Three million fewer people were screened in the UK between March and September 2020 compared with pre-pandemic rates, according to Cancer Research UK (CRUK). Meanwhile, the latest figures show up to eight times more patients were waiting more than six weeks for a diagnostic test at the end of June 2021, compared with the end of June 2019, CRUK estimates.

This is undoubtedly having an impact on survival rates, which were already worsening pre-pandemic, with the UK ranked poorly against other comparable countries.

However, the NHS is stepping up, with the numbers starting cancer treatment now overtaking pre-pandemic levels by 14 per cent for England in June 2021, compared with June 2019, though levels are still down in some cancers, with lung, testicular, urological and brain cancer referrals below pre-pandemic levels, according to CRUK.

“The impact of Covid on cancer services has been devastating and despite signs of recovery, there are still tens of thousands of people who may have cancer left undiagnosed or are waiting for tests,” says Michelle Mitchell, CRUK’s chief executive. “Even before the pandemic, cancer services were struggling and the UK could face the prospect of survival going backwards for the first time in decades.”

We hear from three people on how the pandemic has affected their cancer…

‘I was diagnosed with stage four bowel cancer after waiting more than six months for a colonoscopy’

Pearl Bartlett, 46, a mature student at Bristol University, from Bath

“It all started with a stomach ache in late 2019, which my GP thought was IBS. But the pain didn’t go away and it felt like labour pain every time I had a bowel movement, so in January 2020, my GP referred me for a colonoscopy. But then the pandemic hit. My colonoscopy was delayed for months and every time I called they’d ask if I was bleeding, which is the classic bowel cancer symptom. Because I wasn’t, I just kept getting placed at the back of the queue. I think my GP sent 12 referrals before they finally saw me.

“I eventually had a colonoscopy in July 2020 and they could see straight away I had a huge tumour, which was advanced stage four cancer that had attached to my stomach wall. They booked me in for keyhole surgery, but before they could operate I was rushed into hospital in severe pain as the tumour had attached to my stomach and my bowel had ruptured.

“I had to call my family to say goodbye, because they weren’t sure whether I’d pull through. Since then I’ve developed PTSD as that whole night was so traumatic.

“They had to remove half my stomach and bowel and I ended up with a stoma bag. They then discovered I have Lynch Syndrome, a genetic mutation that means I’m at a higher risk of other cancers, so now I need a full hysterectomy, as a preventive measure, and I’m back in limbo waiting for more surgery.

“I’m getting support from the oncology psychiatric team with EMDR (Eye Movement Desensitisation and Reprocessing), for trauma, which includes tapping, but mostly it’s over the phone because they’re not doing face-to-face appointments. I’ve only seen the nurse once, even though I’ve had issues with the stoma bag leaking, as the staff are all overstretched due to the pandemic. I’m lucky that my husband is so supportive, and once a week I join an online support group run by Bowel Cancer UK, where everybody is in the same boat. It really does pick you up.”

For further information and support contact Bowel Cancer UK

‘My surgery for early prostate cancer was delayed by six months due to lockdown’

Dunston Patterson, 63, a criminologist and head of Youth Justice Innovation, from North London

“In the five years leading up to lockdown, I was already being monitored for prostate cancer. They’d dissolved a tumour in January 2015 with high intensity ultrasound, and since then they’d monitored my PSA levels – a rise can indicate cancer is back. In late 2019 my PSA started rising again and an MRI scan in December showed the tumour was moving towards the edge of the prostate. It was no longer a case of watching and waiting, and in January 2020 they said: “This needs to be done now”. My surgery was booked in for April 2020, but then Covid hit.

“I’m quite calm normally, but I was anxious. You start to panic, don’t you? What happens if it’s too late and it spreads outside the prostate? That’s a completely different treatment, which could be life-changing.

“I understood the need for the delay, but the three months of waiting were almost frantic. You wake up every morning asking yourself if you’ve felt pain and if that means the cancer is spreading.

“Luckily, I got an email in June 2021 saying a spot for a robotic prostatectomy had opened up in July. When I had the operation, the tumour was right up against the wall of the prostate and about to go through, so they had to take out a bigger area of flesh around it just to be sure. I’m recovering now and my PSA levels are back to normal. But my surgeon told me that another month or two and it could have been a completely different story.”

For further information and support contact Prostate Cancer UK

‘After developing a cough in March 2020, it took eight months to get a CT scan. Now I only have one or two years left to live’

Richard Tunningley, a coach education manager, 56, from West Yorkshire

“I first developed a cough in March 2020, and an antibody test confirmed that I’d had Covid, although of course there were no PCR tests at the time. But the cough, which was quite aggressive, hung around. Seeing a doctor was nearly impossible. In early April, I eventually spoke to a GP and was prescribed antibiotics, but the cough came back. I finally managed to get an appointment with a practice nurse in September, who checked my chest and sent me for an X-ray, which showed a shadow on my lung. Again, they prescribed antibiotics and sent me for a follow-up X-ray six weeks later.

“This time the shadow was bigger and they sent me for a CT scan in November, which found a 7cm cancerous tumour in my right lung and I was referred to a lung specialist.

“At first I was hopeful they could take the lung out, but a PET scan showed the cancer had spread, and I had some spots in my pelvis and left femur, and on December 23 I was diagnosed with stage four terminal cancer, with a prognosis of one to two years.

“If I’d had the CT scan earlier, or seen a doctor face-to-face earlier, would they have caught it before it spread? We’ll never know.

“I understand why I didn’t see a doctor sooner, but I probably could have been more insistent or gone to A&E. But I’ve never smoked, so I wasn’t too worried. That’s what I want to emphasise to anybody reading this – if you’ve got a cough, get it checked out. People get lung cancer in their 30s and 40s.

“Once I’d had the CT scan, the specialists were great and things moved quickly. I haven’t had traditional chemo because I have a specific mutation that can be treated with a new drug Alecensa, which inhibits cancer cells.

“I’m a positive person, but it was devastating for my family and it’s been tough on my wife, and now I’m trying to make memories for them.”

For further information and support contact the Roy Castle Lung Cancer Foundation