Pontardawe cancer survivor joins innovative follow-up care approach trial
Swansea Bay University health Board say that head and neck cancer patients would traditionally be seen in regular clinics for five years after being treated, using up NHS resources and often involving long journeys.
Now, though, some have the chance to be in charge of their own health by deciding when they want their clinic appointments.
They are being educated about the symptoms of recurring cancer and if they have concerns they are guaranteed an urgent appointment.
The Cancer Institute at Swansea’s Singleton Hospital is one of a number of UK centres taking part in a trial called PETNECK2.
The health board say that so far, 26 people being treated within Swansea Bay for head and neck cancer have been recruited, with more expected to follow before the trial closes around this time next year.
One of them is 64-year-old Merv Williams from Pontardawe (pictured top), who praised the “fantastic” treatment he had received following his cancer diagnosis in the summer of 2023.
“Joining the trial means I’m being proactive in my own healthcare,” said Mr Williams, who is originally from London. “Plus it helps others. If there are positives to come from this trial, I’d be wrong not to do it.”
Martin Rolles, consultant clinical oncologist at Singleton Hospital, said patients were randomised into two separate approaches.
“Half of them go on our standard follow-up, which is where we see them every few months for five years,” he said.
“Half of them, if they’re clear of cancer and clinically well 12 months after the end of their treatment, have a PET scan. If that’s negative, then instead of being followed up in clinic, it goes to patient-led follow up.
“This means they have some education and they’re then not seen routinely but they can phone up and access us directly at any stage if there is any concern.
“The reason this is important is because we use a lot of resources to see patients every few months for five years.
“And it’s a lot of time and effort for our patients, especially for those who are coming from a long distance. We treat patients from across West Wales, so some of them have a two-hour journey to clinic.”
Martin Rolles with research nurses Nia Viney, Funmi Kayode-Stephen and Emma Trethewy
(Image: Swansea Bay University Health Board)Dr Rolles explained that, if the cancer was going to return, it would most likely do so during the first 12 months after treatment.
The rate of new cancers and recurrent disease after that, he said, was low and most patients were getting on well.
“There are probably around 300 head and neck cancer patients a year in South West Wales, around 200 of which have chemotherapy or radiotherapy,” he said.
“They are complex cases that require a lot of resource. So there’s 200 patients a year but we’re following them up for five years so there are actually many more patients in the system.”
Research nurse Nia Viney said patients consenting to the trial were provided with a phone app or explanatory booklet.
“We teach them what to look for, when to contact us, how to check their mouth,” she said. “They get contact details, or they can contact us directly through the app if they have a problem.”
The Cancer Institute was built following a £1 million charity appeal run in conjunction with the South Wales Evening Post, leading up to the opening of the South West Wales Cancer Centre (SWWCC) in 2004.
The SWWCC provides the infrastructure for the Institute’s research delivery team, together with cancer and haematology clinicians, to run various UK and global trials.
Funding from the Welsh Government, via Health and Care Research Wales, has supported the growth of cancer research within the health board where up to 30 trials can be running at any one time.
And Swansea Bay is frequently among the top recruiters, most recently winning an award for recruiting to a prostate cancer trial.
That success has been replicated in PETNECK2, which saw Swansea Bay become the top recruiting site in the UK for December.
“We consider the trials that we take on and whether we have the patient population to suit the trial,” said Nia. “We put the resources into those trials. We always make sure we have the capacity to do it.
“For this particular trial we screen every head and neck clinic and approach all suitable patients to see if they would be interested. Obviously, some have said no.”
Nia said having Macmillan head and neck oncology clinical nurse specialist (CNS) Courtney Bell involved had been very helpful.
She added: “Working collaboratively with the CNS was very important within this trial and we needed to combine our skills.
“The patients have already developed a relationship with Courtney through treatment and that has been really helpful.”
Dr Rolles added: “The patients are generally enthusiastic about this. We haven’t found it too difficult to recruit.”
Mr Williams said he did not hesitate when he was asked if he wanted to join. He underwent gruelling treatment including surgery, chemotherapy and radiotherapy for a throat tumour that had spread to his lymph nodes.
He completed the treatment in November 2023. He was declared NED, or no evidence of disease, in May 2024 and continued to have regular scans until January this year.
By this time, he said, the two-monthly hospital appointments were only to check his throat with an endoscope as scans had confirmed there was no sign of cancer anywhere else.
“I believe the trial is very positive,” said Mr Williams. “They mentioned it to me in November and I said I was up for it.
“The appointments cause a bit of strain on your lifestyle. You couldn’t book anything, and they were the cause of some anxiety.
“I’m doing it for myself, my family and my friends but also as a way of repaying the incredible care that has been bestowed on me.
“I genuinely want to help. I feel I am doing something positive as opposed to just being a patient and contributing to the whole cancer research environment.”
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