Cancer and Covid-19: ‘Patients are extremely concerned about coming into hospital at the moment’

The risk of infection coming into the home of nine-year-old cancer patient Pádraig Beasley has been a worry for his family ever since he was diagnosed with stage four neuroblastoma at the age of five.

But news of Covid-19 “surpassed all fears” says his mother Maeve Fitzgerald. Yet, she admits she thought her partner Séamus Beasley had “lost the plot” when he decided to stop their eldest child Julia (10) attending school on Monday, March 9th.

By the Wednesday, she was beginning to think he was right and, by the Friday, every other child in the country was staying home as the schools had closed.

The couple’s other immediate concern was that the frontline cancer treatment, which Pádraig had been receiving since a relapse last September, would be stopped. One of his chemotherapy treatments is oral and she thought maybe only that would continue, at their home in Listowel, Co Kerry.

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However, there was never any suggestion from Pádraig's medical team that his treatment would be delayed. And Maeve was reassured that when she rang the children's hospital, CHI Crumlin, with a query about the plan for radiation therapy in addition to ongoing chemotherapy, the consultant rang her back from home.

With the country in lockdown, Pádraig started three weeks of radiation therapy in St Luke’s Hospital in Dublin towards the end of April. He regards radiation as “a break”, says his mother, because it doesn’t make him sick the way chemotherapy does.

The couple had contemplated getting an Airbnb place in the city where the whole family would go as a unit for the three weeks. While it would have been better to be all together, she says, they were wary of being in Dublin, where Covid-19 cases were concentrated.

“You do feel more secure coming home and doing your shopping here,” says Maeve, who is “holding the fort” as we speak, while Séamus is in Dublin with Pádraig, staying in the Ronald McDonald House in Crumlin and travelling to St Luke’s every morning for treatment. She jokes that she and Séamus fight over who is to go up with Pádraig each week, as the one left behind has sleepless nights with their youngest child, 18-month-old Jack.

On the home front, Covid-19 “has isolated us hugely”, says Maeve. Ever since Pádraig’s diagnosis, “a massive saviour” for them had been family and friends calling – until all that had to stop.

Having to go to St Luke’s was a fresh concern because at least with Crumlin, where Pádraig receives his chemotherapy, “you’re hearing paediatrics is not affected that much”, Maeve points out. However, reassurances from his radiation oncology consultant, were reinforced by seeing safeguards in action. For a start, there is a triage process every day at the entrance.

More secure

“Pádraig goes in in a buggy with a dome over him and wearing a mask and Séamus wears a mask and all the people working in there have been wearing masks.”

Their son is also being taken as the first patient of the day for radiation on two tumour sites, one in the eye and the other in his right leg.

“These are things that make you feel a little more secure about it. There is no waiting. We attended St Luke’s before, for six weeks, and you would have been waiting – with six or eight other patients. It’s a big difference.”

Cancer services have continued through the pandemic, says Dr Triona McCarthy, consultant in public health medicine with the HSE's National Cancer Control Programme. There were some temporary changes as services adapted to, say, a switch of location or staffing issues, but all those involved in cancer care have worked together "to minimise disruption".

While cancer patients might have heard services had stopped in other countries, there was no clampdown here. Cancer care “has been protected from day one, people have continued to have chemotherapy and radiation”.

Some treatments have been postponed for a few weeks but “very much on a case by case basis, as to what was reasonable for an individual patient”, she says.

With an imperative to protect cancer patients coming into hospital from the risk of Covid-19 and, equally, to protect staff and in-patients, changes have been made to reduce footfall into the hospitals, such as evidence-backed alterations to numbers of treatments, follow-up appointments conducted by phone and visitor restrictions. “These are all things that are going to stay for the foreseeable future,” says McCarthy.

While medical cancer teams have been adjusting to a new way of delivering treatments, they are worried about patients who have stopped coming as the new fear of Covid-19 trumped their other health concerns.

St Luke's Radiation Oncology Network (SLRON), which provides radiation oncology services to approximately 4,500 new patients a year through its centres at St Luke's in Rathgar, St James's Hospital and Beaumont Hospital, has seen a drop-off in numbers coming for potentially curative treatments.

"Patients are extremely concerned about coming into hospital at the moment – there is a nervousness about picking up the virus," says Dr Clare Faul, network director and clinical director of SLRON.

Therapy is safe

“Even in patients who have a critical diagnosis of cancer we are finding, especially in the over 70s group that are cocooning, they are loath to come to appointments. They are nervous about coming into hospitals in case they pick up the infection. To a certain extent they are turning down the opportunity to pursue their treatment, which is something that is concerning us.”

She recently wrote an open letter to all their patients, assuring them that radiation therapy is safe to receive during the pandemic and outlining “robust” steps being taken at the SLRON centres to reduce the risk of any patient contracting the virus.

There is a misconception, she says, “that because you have cancer and you come in and get radiation you will be at high risk of picking up the infection – that is not the case”. Radiation therapy is not as immune-suppressive as chemotherapy and has far fewer side effects, with respect to blood counts and toxicity in the lung.

The SLRON, in common with other national and international cancer care centres, put a huge effort during the early days of the pandemic into looking at how they were treating patients. There is a fine balance, Faul explains, between minimising the risk of patients being affected by Covid-19 and maximising their cancer outcomes.

The network’s new way of doing things includes blocking off internal access to and from the main hospital at their St James’s and Beaumont centres and checking patients at the entrance to ensure they are free of Covid-19 symptoms. They are also using virtual clinics where possible and altering some treatment plans.

Decisions regarding treatments draw on research that shows outcomes should not be compromised. For example, a reduction in the number of radiation treatments for some breast cancer patients (see panel) is based on a large, randomised study that has just been published.

Our whole aim is to treat patients as safely as we can and keep their cancer outcomes optimised

SLRON also had to draw up a contingency, five-stage escalation plan for reduced capacity due to potential staff shortages. Processes they put in place to make their centres safer, such as slowing up appointments so those attending have less contact with other patients and dividing the staff into two groups to minimise risk of cross-contamination, have meant a reduction from a maximum of 340 patients daily within the network to 260-300 a day.

At the time of writing the three centres are operating at level two, or 80 per cent of staffing. While this is reviewed every week, Faul expects it to remain at that for the time being.

There are categories of patients whose treatment has been deferred, based on international guidance, she says. These include benign patients, who are safe to leave for a few weeks, and other low-risk patients. Cases are being regularly reviewed and each doctor can prioritise any patient who they feel should start treatment.

Clinical benefit

The treatment of thyroid cancer patients is a little problematic, she says, “as they get high-dose iodine, so they are radioactive and need to be admitted over a week”. If they were to develop Covid-19 symptoms during the treatment, it would be difficult to transfer them. The recommendation has been to defer treatment and, generally, this can be done safely for up to six months.

SLRON’s plan was done initially for three months and then everything will be reviewed. They hope then to bring back, on a phased basis, any patients whose treatment was delayed.

“Our whole aim,” she adds, “is to treat patients as safely as we can and keep their cancer outcomes optimised.”

Trust your clinician who will weigh up the risks, is McCarthy’s advice to nervous patients. “If you are still not sure, talk it through.

“It is important that people understand the risks and benefits of all the treatments and why certain things are being done and changed, such as people having radiotherapy instead of chemotherapy, in certain situations. There are a lot of things you can play around with that will have the same clinical benefit,” she adds.

The number of contacts to the Irish Cancer Society’s support line increased by approximately 60 per cent in March and April, compared with the previous two months.

“This increase was driven by a large number of queries relating to coronavirus, and we have been receiving many requests for emotional support, information on cancer treatments and side effects,” says a spokesman for the society.

In response, the society collaborated with the National Cancer Control Programme and Cancer Care West to establish a new Together 4 Cancer Concern support service at the end of April. It is available for free from anywhere in Ireland through the society’s helpline 1800 200 700.

A panel of cancer counsellors with connections to community support centres across the country, along with a team of clinical psychologists from Cancer Care West, are trying to ensure that all callers can access the right supports at the right time.

Virtual support

There is always a need to help people with the emotional and psychological side of having a cancer diagnosis, says McCarthy, and now there is the additional worry of having a cancer diagnosis during the pandemic. While in normal times people could meet counsellors face to face, the services had to devise a system so people could be directed to virtual support.

Meanwhile, as Pádraig’s radiation treatment continued, it was what seemed a simpler issue – a dental problem – that took longer than normal to get sorted. Pre-pandemic, he would have just been seen immediately by a dentist in Crumlin hospital while he was up in Dublin.

Cancer is not going to go away just because we have a new problem called coronavirus

“Somebody like Pádraig is susceptible to infection and infection can be serious for him,” says Maeve. This time they had to photograph the tooth, email it to the dental service and wait.

“You just have to do things differently – so do they.”

To her relief, a few days later they were given an appointment in Crumlin for an X-ray, which Pádraig was able to attend.

“They are managing to remain efficient,” she adds of cancer patient services, “in Pádraig’s case anyway.”

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“In my own head I was hoping it would be put off,” says Michelle Johnston of the four weeks of radiation therapy she was due to begin on April 14th, as coronavirus cases were multiplying.

However, if it was to go ahead, she was determined to not let fear of Covid-19 deter her from the treatment that was recommended, after being diagnosed with invasive lobular breast cancer on December 19th last and having surgery in February.

A week before her radiation was scheduled to start in St James’s Hospital in Dublin, her radiologist phoned to say they had a new treatment plan for her. It would allow them to give her the radiation within just one week, rather than having her travel up and down from her home in Tullamore, Co Offaly, for four weeks. She was to go for three sessions Wednesday to Friday one week and then Monday and Tuesday of the following week.

“They assured me it would be just as effective,” says Michelle, who was nevertheless a little worried because her mother, who had had a similar breast cancer, got radiation treatment over six weeks, three years ago, and she was very sore and burnt. She feared she might have a similar experience.

“I was completely wrong, I am flying it,” she says. While it was a bit uncomfortable, she couldn’t believe she had got it all done in a week.

It meant not only a lot less time away from home and her four children, ranging in age from 18 to 12, one of whom has special needs, but she also felt it would reduce her risk of picking up Covid-19.

“I was nervous going up because I didn’t know what to expect,” she says. But on arrival her mind was put at rest immediately by the obvious precautions and she was in and out in 20 minutes each day.

“I actually felt safer going up there for the week than I would going on my weekly shopping.”

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The number of people referred by GPs to cancer services dropped by more than half after the introduction of Covid-19 restrictions, prompting appeals for anybody with a possible symptom to contact their doctor.

Electronic referrals of suspected lung cancers dropped 61 per cent, breast cancers by 55 per cent, prostate by 50 per cent and pigmented skin lesions by 72.3 per cent.

“Cancer is not going to go away just because we have a new problem called coronavirus,” says Dr Triona McCarthy, a public health consultant with the HSE’s National Cancer Control Programme (NCCP).

“We are very keen to say to people that if you have any symptom that might be cancer, just talk to your GP in the first case.  You might not have to go to the hospital at all.”

Her comments were echoed in a statement by the Irish Cancer Society's CEO, Averil Power.

“When it comes to cancer, early detection is key and can be the difference between life or death in some cases,” she warns. “Cancer will not wait for the coronavirus pandemic to pass and it is so important that anyone who needs medical attention seeks it.”

The NCCP, which has been monitoring referrals, says there are signs that the numbers are beginning to increase again.