All cancer patients are equal but are some cancer patients ‘more equal than others?’

Report from lung cancer stakeholder event

A recent meeting heard from a range of speakers on the challenges faced by lung cancer patients, including stigma and the need for early diagnosis. The meeting, held in the Royal Hibernian Academy in Dublin, was initiated and managed by the Marie Keating Foundation and MSD and brought together speakers representing patients with lung cancer and physicians to discuss the issues faced by these patients in Ireland. Titled ‘Living with Lung Cancer in Ireland: Are All Patients with Cancer Treated Equally?’, the event was held to coincide with Lung Awareness Month 2018 and attendees first heard from Mr Ger Brennan, Managing Director of MSD Ireland. Mr Brennan told the meeting that his hope was to “ignite a debate on lung [cancer] inequality in Ireland”.

Mr Brennan said: “I think it’s fair to say that not all cancers are treated equally, and that’s certainly the case with lung cancer, which does not get the focus and attention that other cancers receive. We will hear the reasons for that, but what we hope to do is to challenge some of those perceptions.”

He stressed that lung cancer is the number-one cancer killer in Ireland and pointed out that this is a fact not widely known among the general public. “If you look at the statistics, 2,600 people are diagnosed with lung cancer every year, and that number is growing ,” said Mr Brennan. “If you combine the number of diagnoses of breast and colorectal cancer in Ireland, lung cancer still comes out on top… we hear a lot about breast and colorectal cancers, cervical cancer and melanomas, but we don’t hear so much about lung cancer and that’s something we really should be thinking about.”

The issue is particularly under-reported in women, he added. “There is a 136 per cent increase in lung cancer predicted in women by the year 2040 … and there is a predicted rise of lung cancer of 60 per cent in socially-deprived areas . People who live in a socially disadvantaged area are clearly at higher risk of developing lung cancer than those who live in more affluent areas. In today’s society, is that something we really should accept?” asked Mr Brennan. “I suggest that’s something we should not accept, and we need to get that message out there.”

He presented research, initiated by the Marie Keating Foundation and funded by MSD and Roche, outlining the typical treatment journey of a patient with lung cancer and stated: “There is a shame and stigma associated with lung cancer — it’s seen as a ‘dirty’ cancer,” said Mr Brennan. “People feel judged when they tell somebody they have lung cancer, and that’s not acceptable in today’s society.”

New research
The meeting was chaired by Ms Alison O’Connor, who introduced Ms Liz Yeates, CEO of the Marie Keating Foundation. Ms Yeates presented on the topic ‘New Research on Lung Cancer in Ireland’ and described lung cancer as “the Cinderella of cancers in Ireland” in terms of lack of awareness.

Ms Yeates told the meeting that during 2018, the Marie Keating Foundation has been running a campaign in an effort to raise overall awareness of lung cancer. “The facts are there — lung cancer is the fourth-most common cancer in Ireland, after breast, prostate and colorectal cancers, but it remains the leading killer among cancers,” she said. “Of the 2,600 people diagnosed each year, more than 1,800 die each year . That’s a shocking statistic when you compare it to survival rates for breast cancer, at 83 per cent , and prostate cancer at 92 per cent . So an 18 per cent survival rate is not acceptable .”

The majority of patients with lung cancer present at a late stage of the disease, at stages 3 or 4 , and Ms Yeates suggested that this may be due to a lack of symptom awareness. However, these late presentations may also be partly due to the stigma associated with the condition. “A lot of people feel as if they are going to be judged by their GP when they present with a chesty cough or other symptoms, and for that reason, we want to shine a spotlight on the stigma associated with lung cancer,” said Ms Yeates.

She also touched on the increasing prevalence in women, with lung cancer now surpassing breast cancer as the leading cause of cancer deaths in Irish women . Despite the work in recent years to raise awareness of the dangers of smoking, and the subsequent drop in smoking prevalence, smoking rates remain persistent in certain populations. “We have to continue this education process, but we must do it in a compassionate way,” said Ms Yeates, who outlined the outreach work of the Marie Keating Foundation in raising awareness of lung cancer symptoms. This work focuses mainly on marginalised communities and reaches around 25,000 people each year, she told the meeting, as well as reaching out to teenagers.

“It was shocking that from our research, less than 16 per cent of the population said they were aware of the symptoms of lung cancer,” said Ms Yeates. “In the 18-to-24-year-old category, only 1 per cent said they could list the symptoms. That compares to 30 per cent who were aware of skin cancer and melanoma, and 36 per cent who said they knew the symptoms of breast cancer.”

She listed the symptoms as persistent cough; shortness of breath in everyday activities; coughing-up blood in sputum; aches and pains in the chest or upper body; or loss of appetite or unexplained weight loss. “These symptoms can often be confused with other less serious conditions and we encourage people who have had more than one of these symptoms, particularly lasting more than three weeks, go and see your GP,” she explained.

She also urged Government to attach more urgency to attaining the goals contained in the National Cancer Control Programme and told the meeting: “People with lung cancer are no less deserving of our support and empathy, and treatment, than people with other forms of cancer. We wanted to highlight that fact in our campaign and we have three wonderful patient ambassadors who helped us create that message, and they’re here with us today. And we wanted to highlight that it’s not always the older man who has smoked all his life who gets the disease — it can be younger women, older women, people from different backgrounds and different classes; lung cancer does not discriminate, and that comes through in our research.”

High mortality
Other results from the research showed the high mortality rate in lung cancer is often due to late presentation to a medical professional, and more than 25 per cent of those surveyed felt that people who developed lung cancer and did not smoke should receive priority in terms of treatment over those who had been smokers. Some patients were telling friends that they had breast cancer rather than lung cancer for fear of judgment, added Ms Yeates.

“One non-smoker cancer patient said she was told by her nurse that her surgeon always prioritises patients with lung cancer who did not smoke over those who did, and she felt very uncomfortable with that fact,” Ms Yeates revealed “We want to ensure that people are presenting at an earlier stage, because this saves lives. We want people diagnosed at stage zero, 1 or 2, and for them to have the chance to avail of the treatments available and for us to improve that 18 per cent survival rate and get it up there with the other types of cancers… our survivorship programmes are also there to support people who come through the disease. It is a given that we will continue with our smoking cessation programmes, but we will also continue with our symptom awareness campaigns and we want there to be less stigma and judgment around lung cancer — we want equal access to treatment for all.”

The meeting then heard from Professor Ray McDermott, Consultant Medical Oncologist at St Vincent’s University Hospital in Dublin, who spoke on the topic ‘The Human Face of Lung Cancer: The Clinical Perspective’. Professor McDermott highlighted the serious issue of delayed access to treatments for Irish patients compared to other Western European countries . He cited this as the biggest issue in Ireland when it comes to treating patients diagnosed with cancer.

He drew comparisons to treatment for breast and colorectal cancer treatments, where treatment pathways are established and there is heightened awareness, leading to better survival rates. “Lung cancer, for whatever reason, receives less research funding than many other cancers ,” said Professor McDermott. “It takes a generation for any changes we effect now to reach the population, so it could take 20 or 30 years before we see the effects of what we are doing now to take hold at ground level.”

He also addressed developments in treatments compared to older regimens that involved chemotherapy, which developed into chemotherapy combinations, and on to more targeted therapies that zone-in on specific genetic mutations. This is where immunotherapy has come to the fore, said Professor McDermott, who outlined the mechanism of action of immunotherapy and how it influences the immune system to destroy cancer cells.

“We are seeing patients do better and we want to see more patients doing better,” said Professor McDermott. “Now we are seeing that if we combine chemotherapy with immunotherapy, we can increase the number of patients who are responding and getting a sustained response.”

While the effects of chemotherapy on the immune system would seem to suggest that this approach is counter-intuitive, Professor McDermott explained: “The chemotherapy breaks open the cells and exposes more antigens to the immune system, so they become ‘recognised’ by the immunotherapy.” The next step, he said, will be to combine different types of immunotherapy

However, he explained that it can take two years from the time a drug is approved for use, to the point where Irish patients have access to new therapies.

Stigma
In common with his fellow speakers, Professor McDermott cited stigma in lung cancer as an area that must be addressed. “For instance, bladder cancer is strongly associated with smoking , but people do not make that association,” he told the attendees, “It makes no sense to me that patients with lung cancer are blamed if they smoked. If I have a patient in front of me, I don’t care whether they smoked or not — I just want to treat them. The only reason I would consider their smoking history is in relation to whether or not they will be able to tolerate a certain treatment,” he concluded.

The meeting next heard from Mr. Michael Byrne, cancer survivor and lung cancer patient advocate, who spoke with Dr Anne-Marie Baird of Trinity College Dublin, who is also on the Board of Lung Cancer Europe and is a Cancer Researcher at St James’s Hospital in Dublin. Dr Baird addressed some survivorship issues with Mr. Byrne. “When I came out of the operating theatre, things looked a bit bleak and a lot of things go through your head, questions like ‘Will I still be here next year? Or next week?’” he told Dr Baird. “But I am living proof of the fantastic job being done by medical professionals treating lung cancer.”

Dr Baird asked Mr Byrne what prompted him to have enough concern to schedule an appointment with a medical professional. “Around June 2015, I developed a wheezing on my chest,” he replied. “I had stopped smoking a couple of years before that, so I assumed it was a chest infection.” Having taken a range of cough medicines and antibiotics, he became more concerned when he began to cough-up blood in his sputum. He was immediately referred for hospital tests by his GP, however this suggested a chest infection, but he still remained suspicious that something more sinister was at play. Eventually, an endoscopic ultrasound confirmed lung cancer.

“I was hoping that if it was a tumour, it would be benign,” he told Dr Baird. “But I knew something was wrong. The specialist confirmed that there was a tumour there that was about the size of a two-euro coin.”

Mr Byrne outlined how he was told that if surgery was not performed, he would die, and he was also advised of the outside possibility that he could die during the surgery itself. “But I have to say, my treatment was fantastic,” he told Dr Baird.

Listen to your body’
She asked Mr Byrne what message, as a lung cancer survivor, he would like the attendees to take away with them. “What I would say to people is, listen to your body,” he replied. “Your body will put the signs out there for you — if there’s the slightest little thing wrong, go and see your GP — what harm can it do?”

The final section of the meeting saw a panel discussion featuring broadcaster Ms Venetia Quick, whose husband recently died from lung cancer, and Ms Aileen O’Meara, Advanced Nurse Practitioner in St Vincent’s University Hospital, who specialises in survivorship clinics and immunotherapy review clinics. The panel line-up was completed by Mr Byrne, Dr Baird and Ms Yeates, and was chaired by Ms O’Connor.

Ms Quick outlined her story, describing how her husband Martin was diagnosed in 2017 with stage 3B inoperable lung cancer. The tumour was located close to an artery so this limited his treatment options, she explained, leaving him with a 10 per cent five-year chance of survival. “Martin tried to give up smoking several times, especially when he was in hospital,” Ms Quick explained. “People smoke for lots of different reasons — it’s an addiction that’s very hard to break. When Martin started smoking, it was considered normal in a lot of cases and situations, such as maternity hospitals or even in a GP’s waiting room. He suffered with anxiety, so for him, it was a kind of crutch. Ironically, we were a quite active family and he had a very healthy diet.”

Ms O’Meara stated that “People are being diagnosed with lung cancer earlier and that has been an important focus today. Also, there are more treatment options now as was outlined by Professor McDermott. We have a rapid-access clinic in St Vincent’s and there are others around the country too, so that will help with earlier diagnosis. A chest x-ray does not always show lung cancer but if a person is referred by their GP, within two weeks they should be seen in a rapid-access clinic, have a CT scan or biopsy, and it’s also about finding out what type of lung cancer the person has.

“With lung cancer, there is always a focus on smoking, but like everybody else here, I don’t think people should be blamed for that,” she concluded.

Dr Baird told the attendees that “lung cancer has so many issues, and one of those is that it affects so many men and women. When a disease is sex-specific, it can sometimes make it easier to advocate for it,” she explained.

“As long as we keep lung cancer and smoking linked, we are not going to be able to shift the conversation. Clearly, we need anti-smoking campaigns but after that, one of the most basic things we can do is, when we meet someone with lung cancer, not to ask them immediately ‘So, did you smoke?’ What difference does that make and what would we do with that information anyway? That just adds to the stigma for that patient and their families.” She also pointed out that in women, whether they do or don’t smoke, there is an increased risk of developing lung cancer — this needs to be investigated and awareness needs to be increased, regardless of a woman’s smoking history, she said.

Mr Byrne concluded the panel discussion by saying: “I don’t think it should be held against a person with lung cancer that they smoked. You really don’t know what these people have been going through, such as anxiety and depression, and maybe having a cigarette eases that a little for them.”

Ms O’Connor closed the meeting by thanking the speakers and attendees for contributing to the informative and thought-provoking agenda.

This meeting took place on 28 November 2018. Watch videos from the meeting here

IE-NON-00029|Date of preparation: April 2019