"It might have been easy to avoid having that conversation or to have been less open when it came to what the prospects were," the oncologist says, speaking over video call from his home in York. It was an important one though; knowing what lay ahead enabled her to spend precious time with her family and choose the environment in which to do so.
A shift in how cancer doctors communicate with patients, becoming "more transparent and straightforward”, has been one of the biggest changes he has witnessed in more than three decades of treating people with cancers.
He began doing so in London in the mid 1980s having completed a degree in experimental medicine and pharmacology at the University of Sheffield before spending several years in general medicine. In going into the profession, he’d followed in the footsteps of a neighbour in Leeds.
“I decided I was going to become a doctor when I was about six,” he recalls. “I was living in Alwoodley and around the corner lived a junior doctor who was working in Leeds and later became a medical consultant in York...I apparently decided I was going to become a doctor like our neighbour. He appeared to have become my role model.”
Prof Twelves went into medicine with no thought of becoming a oncologist, only starting to specialise as a means of being able to answer people's questions about what would happen on their cancer journey.
“One of the things that concerned me in those days was that doctors were not terribly transparent with patients about what their diagnosis was and what the implications were,” he says.
“We collectively as a profession would tell patients they had a neoplasm rather than they had cancer and that we could deal with it, rather than telling them that they could still die of their disease. I very quickly found that as a general medical registrar, if I broke the taboo and said that the patient had got cancer and it wasn’t all going to be alright, not surprisingly the patient’s next question was what’s going to happen now?”
He took up a six-month post in cancer medicine in order to better understand and answer that. “Not to be able to tell them ‘don’t worry everything is going to be alright’, which is not always the case,” he clarifies. “But to be able to at least give them the framework of this is what will happen to you next...and give them a sense they weren’t just helpless.”
Prof Twelves has remained in cancer medicine ever since and for at least 30 years has been involved in clinical trials. Today, there are three main strands to his work.
The first is as a Professor of Clinical Cancer Pharmacology and Oncology at the University of Leeds, where he runs and oversees research and clinical trials relating to cancer and works with laboratory scientists to help them understand how their work can impact people with cancer in the clinic.
Based primarily at St James’s Hospital in Leeds, he is also a consultant oncologist with Leeds Teaching Hospitals NHS Trust, seeing and treating people - primarily those with breast cancer that has returned or spread elsewhere - on hospital wards and in outpatient clinics.
He is Interim Director of Research and Innovation at the trust and also holds the post of Clinical Director of the National Institute for Health Research (NIHR) Leeds Clinical Research Facility, which runs clinical trials for new tests and treatments for a range of conditions.
“Clinical trials are absolutely vital,” he says. “Any one of the improvements in surgery, radiotherapy or drug treatments only comes about because clinical trials have been done to show a new approach is safe, that it works and does what it is designed to do, and that it does what it is supposed to do better than existing treatments. The only way we can demonstrate that systematically is by working with patients to take part in clinical trials.”
All areas of his work have been affected to some extent by the Covid-19 pandemic. At the height of the lockdown, cancer clinics were held remotely for patients who did not need to visit the hospital, whilst face to face consultations continued where there were concerns or for treatments and investigations.
“We were very clear that we needed and wanted to prioritise and maintain treatments that had the maximum benefits to patients,” Prof Twelves says. “But where there were two ways of achieving much the same impact and one was more convenient or involved fewer visits to hospital, then our preference was towards discussing that [option] with the patient.”
The aim was to minimise risk for patients, some of whom fell into the clinically extremely vulnerable category and were considered at risk of becoming seriously unwell from Covid-19.
“The number of patients we had on our wards was noticeably smaller,” Prof Twelves continues. “We weren’t clear whether that was because we were using less aggressive treatment on the basis of trying to keep patients out of hospital or whether patients with side effects or other concerns were more reluctant to come to the hospital.”
At present, some consultations continue to take place via phone and video, whilst others are in-person, with the needs, circumstances and risks around each individual patient being taken into consideration.
Changes were seen “more dramatically” when it came to clinical trails. Prof Twelves says about 80 per cent of trial activity was suspended from March until the re-opening process began in July.
The pause freed up clinical research staff to be reallocated to work in other areas of the hospitals and meant research facility sites could temporarily be occupied by other teams, with departments separated into sections that were either ‘covid-free’ zones or areas where the virus was present.
Trial activity is now continuing but Prof Twelves cautions that is in the context of “an increasing number of patients with Covid” and amid the need to devote more clinical research staff to trials in patients with Covid-19 in the hope of finding new treatments.
“Leeds has contributed importantly to [Covid-19] trials that have been successful to date,” he says. “There’s also a big push for us to oversee and support the delivery of the vaccine studies and we are starting those in Leeds. That’s something that needs to be delivered alongside the Covid treatment trials and alongside non-Covid trials.”
There are, he says, a number of concerns around the impact the pandemic could have had on cancer services, particularly around screening and the delivery of an initial diagnosis in a timely way.
That clinical cancer trials were largely put on hold presents its own worries too. Many new treatments in the process of being assessed in trials were - and in some cases, still are - delayed.
As a result of reduced trial activity, income from pharmaceutical companies which fund the per-patient cost of additional tests and monitoring tied to clinical trials will now be reduced, Prof Twelves says. All this is added to the fact that charities have seen their fundraising efforts hit hard and this loss in income could reduce the number of trials they are able to fund.
“Across the board, this is a real worry,” says Prof Twelves, “and I’m conscious every morning one hears special pleading [for financial support] from individual groups of professionals or the public but this is a real concern especially with diseases that have a particular impact on morbidity and mortality...It’s an ongoing worry how we’re going to keep research teams together.”
Still, Prof Twelves believes the response to the pandemic has also had its positives, highlighting areas where reforms could be made to the clinical trial process in the future, whilst maintaining patient safety.
Technological advancements could mean that fewer trips to hospital are necessary; people with cancer for example may not need a weekly hospital visit if technology enables them to monitor and record their blood counts effectively each day at home.
“Over a period of time the complexity of clinical trials has become ever greater,” he says. “We’ve collected more and more information and I think one of the things the pandemic has made us start to look at is how much of the information we collect is the nice to have and how much is the need to have and also whether the patient needs to come to the hospital or if it is a nice to have for them to come to the hospital. It’s making us look differently at things.”
“The regulatory authorities again whilst conscious of not sacrificing safety have also been more flexible and receptive to different ways of doing things in setting up trials especially with Covid,” he adds. “It goes to show there are ways to do things equally safely but more effectively and rapidly when needed and we’ll be keen to learn from that.”
Support The Yorkshire Post and become a subscriber today.
Your subscription will help us to continue to bring quality news to the people of Yorkshire. In return, you'll see fewer ads on site, get free access to our app and receive exclusive members-only offers.
So, please - if you can - pay for our work. Just £5 per month is the starting point. If you think that which we are trying to achieve is worth more, you can pay us what you think we are worth. By doing so, you will be investing in something that is becoming increasingly rare. Independent journalism that cares less about right and left and more about right and wrong. Journalism you can trust.