In the ebb and flow of a life, once in a while something happens that catches you by surprise. It lifts the spirits to a different, better place. During 2023 one such moment came, without warning, on November 18 in the Oriel House Hotel in Ballincollig, Co Cork.

We were there for the annual gathering of our support group for patients with neuroendocrine cancer and their families, the Netpatient Network. The Tánaiste, Micheál Martin, a former minister for health, had spoken at the start of the discussions. The most important part of the day was underway, where patients get a chance to put questions to a panel of doctors and other experts.

At the back of the crowded function room, a woman raised her hand. Minutes before, she had walked into the hotel lobby, intending to buy a coffee at the coffee kiosk. In recent weeks she had been trying to come to terms with what is an earthquake in her life. She had been diagnosed with cancer. The site of the primary tumour had been identified and tests were in train to investigate if the disease had spread to other parts. 

Before her illness was discovered, the woman had never heard of neuroendocrine tumours. As she sought information about what the future might hold for her, Internet searches were increasing rather than calming her anxieties.

But on that Saturday morning when she called to a local hotel to buy a cup of takeaway coffee, she chanced upon a pop-up stand advertising a meeting about the rare disease that was troubling her. She struggled to compute that the coincidence really was happening.

In the function room, she listened to some of the exchanges. Eventually, she plucked up the courage to raise her hand and ask her question. She had a query about a form of MRI scan that was being scheduled for her. She wanted to know its significance. 

The response and the way in which the knowledge was shared with her was a counterweight to the ambush that had been burdening her for weeks. She had stumbled upon fellow travellers, with experience of navigating the journey that lies ahead for her and her family. The pent-up dam of worry burst and the woman began crying tears of relief.

My introduction to the concept of mortality

Exactly 30 years ago, Ceara and I returned home for a fortnight’s holidays, keen to share and rejoice in our special gift. We were bringing our eight-month-old daughter from Belgium for her first Christmas in Ireland. The previous year, in October 1992, my father had died. In March 1993 my mother lost her mother, a month short of her 101st birthday. Ceara’s mother was coming from Cork to Sligo for Christmas, thrilled that the youngest of her four daughters had started a family. Our hope was that the presence of new life would provide some comfort for the loss of loved ones and make the connection with the timeless nature of family bonds. 

The holiday took an unexpected twist. A nagging pain during the final days in Ireland led to my hospital admission on return to Belgium. Things that I didn’t see coming followed: a cancer diagnosis, a close-up introduction to the concept of mortality and a range of experiences that has influenced my life in the three decades since.

The most significant factors are the interactions with individuals and systems in the course of the bottom-line desire to stay alive. 

Most cancers grow like mushrooms, damaging organs and halting the smooth functioning of the body. NETs (neuroendocrine tumours) are different. They cause trouble on a second front. As well as growing and spreading, they tend to secrete damaging hormones that cause problems. The primary site is usually in places like the stomach, bowel, lung or pancreas. Often by the time the disease is diagnosed, it has spread to the liver, where the tumours gather like dead leaves around a drain.

In most cases, NETs are a chronic condition but patients can live with it for many years. It is estimated that more than 3,000 people in Ireland have the disease.  

My diagnosis in early 1994 was that I had a mid-gut primary tumour, more disease further up in the mesentery area and lots of tumours, known as metastases, on the liver. Nowadays when I go for six-monthly scans, 30 or so such tumour sites show up on my liver.

Thirty years ago, there were no coordinated services or pathways within the Irish health service to help people diagnosed with neuroendocrine cancer. Being a part of the birth and the development of services in Ireland for patients like me is an uplifting experience. 

In the early days, when the prudent response was to not rely on the system in Ireland or indeed Belgium, I sought help at an established centre of expertise in Uppsala, Sweden. 

The right as an EU citizen to access such care in another EU member state made it possible for me to travel to Sweden. My good fortune was I knew about the measure known as the E112 provision because I covered the case that established it in the Luxembourg-based EU Court of Justice.

Other Irish citizens with the same disease would follow my travel path to Sweden. I had complex surgeries and other treatments there a number of times and am alive because of them. 

The case to establish an Irish Centre of Excellence         

My reliance on the Swedes ended over a decade ago as Ireland began to develop an Irish version of the Swedish model. The story deserves to be shared because it is both true and important.

It began when doctors like endocrinologist Donal O’Shea and surgeons Justin Geoghegan and Donal Maguire of Saint Vincent’s Hospital in Dublin took note of the number of Irish patients being diagnosed with neuroendocrine cancer. Others, too, were conscious of the situation and keen to address it. Medics like surgeon Criostóir Ó Sulleabháin and oncologist Derek Power in Cork and oncologist Gregg Leonard and endocrinologist Marcia Bell in Galway.

One evening when Mary Harney was minister for health, I went to see her with Donal O’Shea. We made the case for an Irish Centre of Excellence serving NETs patients. 

Professor Tom Keane was the first director of the National Cancer Control Programme, given responsibility to develop Ireland’s cancer services. He had returned to Canada when our campaign began but his replacement, Dr Susan O’Reilly, supported it. Her successors, Dr Jerome Coffey and Professor Risteard Ó Laoide have continued that policy.

While Donal O’Shea fronted the case to establish the new centre, he readily acknowledged that he would not be the best person to take charge. The stand-out candidate for that function was a Carlow-born gastroenterologist, Professor Dermot O’Toole, who has an international reputation in the field.  

As the national lead, Dermot O’Toole has an unusual background. He is based in Saint James’s Hospital, Dublin which has academic links to Trinity College. Saint Vincent’s, where the Centre of Excellence is based, has ties to UCD. It is unusual and innovative to have someone who straddles both camps in such an important role.

The way in which knowledge and experience are being amassed and used is an important factor in the centre’s development. Once a fortnight, at their multi-disciplinary team meeting, doctors from a range of specialist areas review patient files and recommend treatment paths. Satellite centres in Cork and Galway feed into the loop.

When the St Vincent’s site opened its doors, I made a conscious decision to repatriate my care to Ireland. In the early days, it was akin to a hedge school. Then it moved to the equivalent of the pre-fab stage. In 2016, the European oversight body awarded it Centre of Excellence status. Simon Harris was the minister of health at the time and was delighted to unveil the plaque, formally acknowledging the advance.

Twelve years ago in University College Cork, consultants Criostóir Ó Suilleabháin and Derek Power organised an international conference of doctors, with a section of the programme dedicated to neuroendocrine cancer. They invited a patient’s input to those discussions. From that meeting came the idea to establish a support group for patients and their families. 

The Netpatient Network support group was established the following year, in 2012.

Celebrating the power of collective energy

The annual gathering, usually held on the second or third Saturday each November, is the most important group event. It is a celebration of the power of collective energy because all the different parties attend; patients, their families and friends, doctors, dieticians and other health professionals, the nurse specialist from St Vincent’s, the HSE Treatment Abroad services unit manager and representatives of the Irish Cancer Society. 

We ask companies in the pharma sector who make money from our condition to fund the running of the event and they willingly do so. 

The experts who keep us alive come to the conference year in, year out, without fail, on a Saturday, and make light of doing so.

Enormous fulfilment flows from being together and doing positive work. But occasionally there is the hammer-blow reminder of how the disease can become so aggressive that no combination of expertise and will-to-live can stop it. 

Wexford auctioneer Adrian Haythornthwaite was the most energetic member of our committee at our annual gathering in November 2022. Four short months later, he died. More than a decade ago, I met Carmel Connellan in a hospital ward in Uppsala. She was an able senior manager with AIG Life and Retirement, based in Bray, Co Wicklow. She had a wonderful sense of fun. She was so thin and frail that you wondered how she managed to survive the cold winters, yet she beat back illness many times. Carmel died last January.

Each time a gap arises, someone steps forward to continue the work of the person who has passed. The latest recruit to the committee, Margaret Flannery, lost her mother to NETs. The organisation’s social media sites are run by a Cork patient, Mary O’Brien and her partner, Eoin O’Leary. The committee chairman, Mark McDonnell, also a patient, is the president of the international umbrella organisation of NETs support groups. 

Access to treatments not available in Ireland                                           

One of our most significant achievements as a co-operative is the way in which we’ve managed to retain access for patients to treatments that are not yet available in Ireland.

In 2008, my disease was in a new active phase and I travelled to Sweden for what was a new form of treatment. It hadn’t been approved by the US regulatory authority, the Food and Drug Administration (FDA) and in the Uppsala oncology ward, I met patients from many countries, including Argentina and Israel.  

The technical name for the treatment is Peptide Receptor Radionuclide Therapy (PRRT). It involves infusions of a radioactive isotope. At intervals over an eight-month period, I was given four doses of PRRT through a drip. The treatment stopped once the danger of permanent kidney damage became a concern.

In the years since, dozens of Irish patients have travelled abroad for PRRT and are alive or have had their lives extended because of it. Each time, on the recommendation of a consultant, the work is sanctioned by the HSE. No distinction is made between those who have health insurance and those who don’t.  

Uppsala is the most popular destination but other centres have been used too, including hospitals in Rotterdam and the UK. PRRT is now a mainstream treatment option for NETs patients throughout the world, including the US.

Up to now, PRRT has not been available for NETs patients at the Saint Vincent’s Centre in Dublin or elsewhere in the country. It didn’t make financial sense to introduce such specialised treatment for the numbers involved. The pragmatic policy was to send patients abroad. But as diagnosis improved and the numbers presenting with the disease increased, the maths began to change. There is also the reality that, for a variety of reasons, including age, ability to travel or stage of the disease, some people might be unable to travel abroad.

The missing piece of the jigsaw is now in place

In late October, all that changed. For the first time at St Vincent’s Hospital, an Irish patient received PRRT treatment. In November, the treatment cycle of a second patient began. The advance made no headlines or caused no rows but for our cohort of cancer patients, it is a huge advance. A missing piece of the treatment jigsaw is now in place.

The new service has been many months in the planning, with the national lead, Professor Dermot O’Toole, Dr Stephen Skehan, the director of the radiology department and the first full-time NETs consultant at the hospital, Dr Hussein Almeamar, among those driving the project. 

As the Ireland-based PRRT service develops step by step, patients will continue to be referred for treatment abroad. But for some people with the disease, this is the first time they can have access to help that extends life. 

It also means that when the phone rings, as it does a number of times each month, and the caller is a stranger, trying to absorb the news of a cancer diagnosis, I can provide assurance that the health service and outcomes are improving for people like us.   

Thirty Christmases on, I give thanks for those changes that give hope to people like that woman who came for a coffee to a Ballincollig hotel.