Pancreatic cancer is one of the fastest-killing forms of the disease for several reasons, not least that it is typically well advanced before it is identified.
Only about 10 per cent of patients in Ireland are still alive five years after diagnosis, says consultant medical oncologist Prof Gráinne O’Kane, who specialises in pancreatic cancer at St Vincent’s University Hospital in Dublin. (This compares with five-year survival rates of about 88 per cent for breast cancer and 93 per cent for prostate cancer.)
Yet, for the 600 people who develop this so-called silent cancer every year, there is still no rapid diagnostic clinic that would give them a better chance of survival.
We rightly have rapid diagnostic clinics for breast, prostate and lung cancer, she points out, but not for the aggressive pancreatic form. Despite being relatively rare, pancreatic cancer is projected to be the second leading cause of cancer-related deaths by 2030.
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“If there is one that is going to need rapid access it should be that type of cancer, because if someone’s at home, losing ground, not knowing what’s going on, then you can miss a window of opportunity to treat that patient.”
Some tests may be carried out in the community but often not in the way she and her multidisciplinary team would like them to be done. Every week lost is going to make a difference.
“That’s where I guess a lot of us struggle. We see people that you just wish you had seen earlier, then things might not have progressed as much. As a pancreatic cancer grows and grows it gets harder to treat and patients are often sicker.”
Although the cancer is more likely to occur in patients in their 70s, “what is really frightening is that it is increasing in younger patients”. For unknown reasons, in common with other cancers such as colorectal cancer, more people under the age of 50 are being diagnosed.
“I would have many young people in their 40s. My youngest patient was 23 with pancreatic cancer.”
[ Pancreatic cancer: ‘I just can’t explain what it felt like hearing those words’Opens in new window ]
In seven to 10 per cent of cases, there is a family history of pancreatic cancer, a specific gene that predisposes them to pancreas cancer has been inherited. Anybody with this gene should undergo screening but that has not been available in Ireland. However, enabled by a large grant, a screening programme will begin in 2026.
There is some association with the typical cancer risks of smoking, alcohol and obesity, “but we see many patients that don’t have any of those”.
The first symptoms that people go to their GP about may be nonspecific, such as tummy or back pain; other indicators include weight loss, fatigue and jaundice. More awareness among both the public and GPs is needed to recognise where these signs might be leading.
Referral of patients to a specialised clinic would lead to a much quicker diagnosis and decision on whether or not surgery is an option. To its credit, our health system has two designated, specialised centres that perform surgery for pancreatic cancer: St Vincent’s University Hospital and the Mercy University Hospital in Cork.
However, at least 80 per cent of patients will never get to surgery. O’Kane expresses frustration at systemic failings in other aspects of care for these “most vulnerable” of people, who she must look in the eye at the most difficult time of their lives.
You have to want to make sure you’re not a patient who has the potential to access different therapies and could live for a long time
— Prof Gráinne O'Kane
Sitting in her second-floor office, which was vacated by the campaigning oncologist and former senator Prof John Crown on his retirement from the public health service, O’Kane, who is 43, is not afraid to speak out either. Talking rapidly, yet choosing words carefully, she radiates a sense of somebody for whom there is never enough time in the day – for her patients, for research, for her husband, a radiologist, and their three children aged 12, 10 and six, for herself. We meet, she has just spent a weekend teaching on an advanced pancreatic cancer course for European oncologists. She favours cycling and running as downtime pursuits.
She is “very driven” and loves her job in this particularly challenging field of oncology, treating liver as well as pancreatic cancer. Her native Derry accent is coloured by North American tones acquired from seven years living in Canada, where she did her oncology specialist training and was then a consultant in Toronto’s Princess Margaret Cancer Centre. She returned to Ireland and worked for two years in St James’s Hospital before taking up her post in St Vincent’s a year ago.
Rarely the deliverer of good news, she believes in being very honest with patients and in the importance of providing them with support and guidance. She is often “in awe” of how they and their families handle themselves in the face of utmost adversity.
The value of giving options and hope is rarely talked about, she says. Yes, it is an aggressive and highly fatal disease but “some patients I’ve come across have been told not to bother doing anything. This is crazy because every patient is different and every patient’s tumour is different. I have some patients who will live for years.
“That is not commonplace, but you have to want to make sure you’re not a patient who has the potential to access different therapies and live for a long time.”
For her, the “psychological trauma” of the job comes when she thinks she has not been able to offer the patient every possible option. “If I feel that there’s something that they could benefit from, but I can’t get it in Ireland, or I feel like the system has let them down, that’s what I struggle with most.”
She says she and her healthcare colleagues could do better for patients “if we just had organisation and resources in order to deliver a service”. A rapid diagnostic clinic would be part of that, which would also help to attract more clinical trials – another front on which she advocates.
Specialists in pancreatic cancer believe that every patient with pancreatic cancer should be on a clinical trial at every point in their journey. Huge breakthroughs are being made in drugs that can target the very specific gene mutations that occur in pancreatic cancer. She expects these will lead to “extraordinarily different” treatments in five years’ time.
“I’m about to meet a patient today and it’s breaking my heart because I can’t get him on a clinical trial and he’s very fit for clinical trial.” She has contacted centres in the UK, Spain and the US to try and get him on one.
“So that’s not good enough for our patients. We should be able to have our trials here and that’s what we’re trying to do.” The creation of the Pat Smullen chair in pancreatic cancer in UCD, to which O’Kane was appointed last year, was a huge leap forward.
It is named after the nine-times champion flat race jockey who died of this cancer at the age of 43 in 2020 and funded by a foundation set up in his memory. Led by his widow, race trainer Frances Crowley, and supported by the horseracing community, they “are doing an incredible amount to help us fund clinical trials”, says O’Kane. A few, looking at a precision oncology approach, have started.
“If we can really deliver in cancer research, then you’re more likely to attract industry and to have big clinical trial portfolios.”
She thinks it is patients living with pancreatic cancer and their care-givers who are going to change things for the better. They are more informed, asking more questions and looking for second opinions abroad. “It’s brilliant and it should be embraced.”
Doctors need to be challenged and it is easier for both sides when it’s a two-way journey and patients are thinking about their own healthcare. She also pays tribute to the work of the new charity, Pancreatic Cancer Ireland, headed by Rachel Duquesnois and Niall Rochford, who have lost loved ones to the disease, and Pamela Deasy, who is a pancreatic cancer survivor. O’Kane believes they are a driving force of change.
“Fighting against the system here is extraordinarily tough,” she adds, “and that’s why I think the patients are the only people who can make a real difference.”
‘She was deeply, deeply upset’: A mother’s pancreatic cancer diagnosis
“I’ve had this kind of niggling pain in my left side and it’s around for a while.” Those words from Bernie Condron, a week ahead of her 75th birthday in November last year, was the first inkling her daughter Aislinn Swanick had that her “extremely fit” mother might have an issue.
“She walked 5k about four days a week, did about three yoga classes,” says Swanick. She advised her mother, who was staying that weekend with her in Belmullet, Co Mayo, to go to her GP the following Monday when she was back home in Roscommon.
The GP recommended an ultrasound, and Bernie wondered if it could be gallstones. There was a wait for the ultrasound but she got in after a cancellation and nothing untoward was found. Less than 10 days later Aislinn’s sister-in-law rang her to say she was concerned that Bernie was unwell.
“We arranged an admission for her into hospital in Galway the following day,” says Aislinn, who is manager at the GP practice she and her husband Keith, a GP, set up in Belmullet. They have two children, Julian (11) and Rosa Pearl (eight). “That evening she called to tell me that she had pancreatitis, diagnosed on a CT scan.”
At 4am the next morning, Aislinn jumped awake with the realisation that her mother had also mentioned there was a mass on her pancreas. She had not processed that information earlier. But it was a great relief when the biopsy of that mass later came back normal.
“Mum was quite a religious person with a deep faith, as am I. So we went down to the chapel in the church and I said, ‘Mum, you’ve just dodged a bullet. She said, ‘I know’. We sat there together and prayed. And she said, ‘but I wonder what is it though?’”
The diagnosis was “autoimmune pancreatitis”, which Aislinn mentioned to a medical friend of her husband after she bumped into him by pure chance in a local coffee shop. He advised that her mother should go to a specialist unit in St Vincent’s hospital in Dublin to have the mass checked out.
Bernie was quite unwell after an invasive biopsy there but her husband, PJ, and Aislinn were able to bring her home on December 8th last.
She showed “enormous strength” in the next three weeks, living life to the full, says Aislinn. There was some pain but it was manageable.
They were called back to St Vincent’s on December 20th where Aislinn went in with her to hear the “harrowing news” that the biopsy showed Bernie had adenosquamous carcinoma, an aggressive form of pancreatic cancer.
I need to tell you something. I’m not going to engage in the chemotherapy treatment
— Bernie Condron
“She was remarkably strong and resilient, but she was deeply, deeply upset. I think really that I would say half of her died that day. She knew enough that she was going to be faced with an enormous challenge.” An appointment with an oncologist in Galway was arranged for December 23rd.
The oncologist suggested triple therapy, “the same kind of treatment that would be offered to a 45-year-old, because she was so fit and healthy,” says Aislinn. “They were going to give it the best shot they could.”
But the next day Bernie was called into hospital due to very abnormal liver function and before the end of December had a stent put into her biliary duct. She was on the oncology ward for this complication of the disease, upset at being surrounded by very sick people and relieved to be able to go home some days later.
In the first week of January, Bernie had her port inserted in preparation for chemotherapy but Aislinn noticed she had become very quiet on the phone and then stopped answering text messages. Concerned, she had to wait until the thawing of a cold snap before it was safe to drive to Roscommon to visit her.
Aislinn could see immediately that Bernie had psychologically declined. “She was irritable and she was withdrawn.” The next day she was vomiting and Aislinn rang her husband, who suggested she take her mother for a scan.
When Aislinn asked Bernie if she would like to go into hospital for this right away, she replied, “No, I’d like to get my hair done”. Before they left for the hairdresser, Bernie turned to her daughter and said: “I need to tell you something. I’m not going to engage in the chemotherapy treatment.”
Aislinn knew then, “whatever hope we had of treating this tumour, it wasn’t going to be treated now anyway. She was officially palliative.” But she just said, “Well, mum, that’s fine. That’s your decision. We’ll make the arrangements around that.”
“That evening she ate a slice of pizza and we sat up chatting until 10.30pm. She told me, ‘No matter what you do in your life, always prioritise your children. Everything else will fall into place for you’.” Aislinn gave her mother her medication before going to bed ahead of her.
“The next morning, we woke up at 6.20am and she was dead at 6.50am. Cardiac arrest.”
It is some comfort to Aislinn that Bernie, a very independent and kind former secondary school principal and farmer, died “on her own terms” in her own bedroom. “She departed in a very dignified way.”
Having become involved in fundraising in recent weeks for Pancreatic Cancer Ireland, Aislinn has been glad of opportunities to talk about her mother. The Swanicks will be turning their GP surgery purple on November 20th to mark World Pancreatic Cancer Day. That same day her son Julian, a church singer, will be recording a Christmas carol that is going to be released on Spotify.
Working in primary care, she would like to see fund-raising enable a community-based awareness campaign, with a focus on preventative measures rolled out via GP practices.
