Cancer in Ireland: From fatal sentence to liveable illness

Thirty-four years after the first Daffodil Day, cancer treatments and attitudes have changed

It's Daffodil Day next Friday, 34 years after the annual fundraiser for the Irish Cancer Society began in 1988. A lot has changed since then in terms of our understanding of cancer and cancer treatments.

“At that time, an invasive cancer diagnosis was almost universally fatal,” says the society’s head of research, Robert O’Connor. “The main treatment was surgery. So that if you had an early-stage breast cancer, a doctor could come in and you would be cured. But for most other cancers, especially cancer that had spread, the outcome was, unfortunately, predetermined. It was really a matter of time.”

Public attitudes to cancer at the time reflected that reality. “Cancer was talked about in very hushed tones,” says O’Connor. “Sometimes patients wouldn’t even be told that they had cancer . . . The language around cancer was one of, I suppose, inevitability. People didn’t like to speak about it in the same way that we don’t like to speak about death . . . No one mentioned cancer. There was no community discussion around cancer. People were very isolated.”

Things have improved hugely. There are approximately 200,000 people in Ireland living with cancer. "We've moved from a situation of almost 100 per cent fatality for any invasive cancer, to where now, the latest figures are over 65 per cent of people diagnosed with any form of invasive cancer will be alive five years later."

The public understanding of cancer hasn't quite caught up with the biggest change in recent decades

Something some people struggle with, says O’Connor, is the notion that cancer is not a singular disease.

“Non-melanoma skin cancers are by far the most common cancers in Ireland,” he says. “And they’re almost 100 per cent survivable now . . . That’s a very different illness in terms of the expectation of somebody being diagnosed with stage four pancreatic cancer . . . When you think of something as a simple singular disease, it’s very easy to think that there’s one intervention, one magic pill, or zapping ray . . . Unfortunately, that will never be the case.”

There have been huge advances in treatment, O’Connor says, “but the advances haven’t necessarily affected every type of cancer equally . . . We still have, unfortunately, about 9,000 people a year who succumb to it [cancer] . . . That means that every hour of every day, someone in Ireland loses a loved one to cancer.”

Main advances

Donal Brennan is a professor of gynaecological oncology and a consultant obstetrician and gynaecological oncologist at the Mater, the National Maternity Hospital and St Vincent's University Hospital. He says some of the main advances in treatment include "targeted therapies".

“Chemotherapy will attack all the cells in the body in some way, shape or form. It remains a very important part of how we treat many cancers, but what has changed is the addition of targeted therapies which have worked extremely well, in certain conditions.”

There’s also immunotherapy, which “works because the cancer seems to hide from your immune system and immunotherapy unmasks the cancer . . . It has completely revolutionised a certain number of cancers, particularly melanoma . . . When it’s effective, it’s hugely effective . . . [but] it isn’t the panacea that we sometimes hear it made out to be and it’s extremely expensive.”

The importance of cancer screening is still not fully understood by everyone, says O'Connor

Cancer surgery is also used more frequently than in the past. “That has led to significant improvements in outcomes, particularly in things like rectal cancer . . . Ultimately, if you can operate on early-stage cancers, you will likely cure them . . . Nowadays we would regularly operate on people with recurrent cancers or cancer that has come back elsewhere, which we would never have done 30 years ago,” Brennan says.

All of these treatments add up to the biggest change in the past few decades: “The move from cancer as an acute illness to a chronic illness . . . In the past, the understanding of cancer was that it was all or nothing. Either it was caught early, treated and went away, or you died of it . . . Often people diagnosed with advanced cancer nowadays, due to those improvements, will live a long time with the cancer.”

When Brennan speaks to patients with ovarian cancer, “I explain to them that while it’s unlikely that we will cure this disease, we have a very good chance of keeping it under control for a long time.”

The public understanding of cancer hasn’t quite caught up with this. “There’s a narrative in Ireland that if your cancer is gone, just get on with life,” says Brennan. “But there are lots of people who are living with their cancer under control and have long-term complications from their treatment.”

‘Survivorship’

The Irish Cancer Society is increasingly focused on what O’Connor calls “survivorship”, in recognition of the fact that many cancer survivors face ongoing treatment or are dealing with health issues resulting from their treatment and they need services that reflect that. It has plans for a national cancer survivorship centre.

The sophistication of treatments, the fact they are increasingly targeted at specific cancers, and the fact that people are likely to be in treatment for much longer periods of time means that the cost of treatment is rising.

“In the early days, the medicines that were used for treating cancer were relatively cheap,” says O’Connor. “These newer medicines have had a lot of research investment in them . . . The average ongoing cost of a targeted therapy nowadays is about €100,000 per year . . . Some of the treatments that show benefit are into the millions of euro a year and that will cause a problem because as our population ages we will have more people needing them.”

The Irish Cancer Society, which was founded in 1963, believes that the voices of people with cancer need to be included in research and the creation of policy. It endorses a practice called PPI (public and patient involvement), which gives patients input to its research projects. “The medical fraternity has opened up to listen more to patients and patients have been more comfortable to speak about the emotional, psychological, and physical effects of treatment,” says O’Connor.

Brennan agrees. "We've just launched a website, thisisgo.ie, which is a proper patient healthcare collaboration around cervical cancer and ovarian cancer . . . Any time you involve patients in a decision-making process around cancer care, you significantly improve the outcomes."

He thinks that sometimes the language used by doctors hinders clear communication with patients (and has published papers on this topic). "We're all prone to using jargon, even when we try not to, because that's the language that you speak amongst your peers. Doctors are really good at talking about diseases but we're not very good at describing illness. There's a big difference between the disease that I describe and the illness that my patient experiences . . . And I don't think we've got a handle on that patient voice."

While people speak more openly about cancer today, he believes there is still an unfortunate reluctance to discuss some cancers that affect women. “Some of the women [with cervical cancer] will feel that, because of the relationship to HPV, that they may have in some way contributed to their disease, which, of course, is completely untrue. There’s also a massive stigma attached to any woman who loses fertility as a result of cancer treatment . . . I think those stigmas are greater in marginalised parts of society. So there’s definitely a role for education.”

O’Connor says the importance of cancer screening is still not fully understood by everyone. “We’ve [The State has] got three evidence-based cancer screening programmes: cervical, breast, and bowel. “From the age of 55, you are eligible to get the test free, but only four in 10 people take up the test for bowel cancer. We could save hundreds of lives if we got that up to 100 per cent.”

Covid impact

Covid has also had an impact. “Earlier detection means better outcomes,” says Brennan. “There was a significant reduction in the number of cancers diagnosed in 2020. That means that there are people out there either coming through the system now or later who should have been diagnosed in 2020.”

There's a spurious idea that people are more susceptible to cancer now than in the past

There are some other worrying trends. O’Connor notes how myths about cancer can spread. One in 10 cancers have a genetic component (in which case screening can be very useful) and four in 10 can be linked to lifestyle factors. “Everybody is born with a risk of cancer. We can modify that risk by some of the choices that we make . . . So, for example, smoking will raise the risk of a number of cancers, including lung cancer. Exercise will reduce the risk of certain cancer. HPV vaccination will almost completely eliminate the risk of HPV-caused cancers.”

But it’s rare to know why a particular individual has developed cancer, and most cancers do not have known triggers.

“In years gone past, cancer was seen as God’s wish or bad luck,” says O’Connor. “And now people think that there’s a specific cause and they can induce blame in people . . . I have heard of people having unnecessary worries about what might have caused their cancer. You will have come across false stories about 5G or mobile phones or fluoride in the water. There’s a lot of judgment around people’s diets that isn’t evidence-based at all. ‘Clean eating’ is utter nonsense, in all honesty. The main professional advice in terms of [a diet to lessen cancer risk] is to have a very mixed diet and try and keep the calories down.”

Misinformation flourishes online. Some of it comes from people with quack cures to sell and some from angry conspiracy theorists. "There are people on Instagram, YouTube, etc, advocating for various things and people can fall into rabbit holes . . . We're increasingly seeing foreign clinics advertising here with completely bogus claims," he says.

There’s also the spurious idea that people are more susceptible to cancer now than in the past. “In reality, our rates are actually quite stable,” he says. “We know within the next decade we’ll have one-third more cancers. But that’s almost totally caused by the fact that we also expect the population over [the age of] 65 to double

“The rate of cancer among 70-year-olds is 10 times higher than among 40-year-olds . . . hence our numbers will go up.”

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