The Irish Cancer Society Liam Mc Trial (short for Linking In with Advice and supports for Men with Metastatic Cancer) will see selected participants engage in a 12-week programme that aims to meet their health and wellbeing needs on a holistic basis beyond standard treatment.
The research trial will see men receive specialist nurse and dietician support weekly, as well as twice-weekly physiotherapy sessions to empower them to maintain physical activity so important for quality of life. This will be complemented by access to social work and psychological supports to ensure their practical and emotional as well as physical needs are met.
The two-year pilot initiative is the result of a €300k funding commitment awarded to UCC from the Irish Cancer Society as part of its continued efforts to address crucial survivorship issues for cancer patients, and encourage associated service improvements, as well as supporting Irish cancer research.
Should the approach prove successful in improving quality of life among trial participants, it is hoped to roll the model out to many more categories of male cancer patients nationwide as a new standard of care.
Stephanie Corkery works as a physiotherapist on the Irish Cancer Society Liam Mc Trial:
“Research shows the importance of exercise and physical activity during and after treatment for cancer. There are often multiples of side effects treatment such as fatigue, decreased activity and mobility issues.
“I work with the men twice weekly for the twelve week intervention, we have exercise sessions but I also meet with the patients individually. During these sessions we discuss their most pressing needs, some of the men have bone metastases, which can limit some exercises, but we always strive to have them leaving us feeling stronger.”
“So far, we have had some amazing results. Some of the younger men were very active before being diagnosed, they then saw their activity levels drop off after their diagnosis. Many shared that this had a negative impact on their mood and overall wellbeing. Some of the older men were very frail coming to us, this had its own negative impact.”
“I am proud to say we help give these men a sense of confidence. If you could take a video of them on the first day versus the final day, the difference is unbelievable. Each one makes huge physical gains.”
“When I met one gentleman first, he told me he had never exercised in his life. After he finished with us, he went out and bought himself an exercise bike. Another gentleman who said he hated the gym on day one, left and became a member of his local gym.”
“We know the physical impacts of our work but seeing the psychological impacts has been incredible. Many of them see how their improved mobility has resulted in an improved quality of life. It’s particularly lovely when some of them discuss having more energy to spend time with their grandchildren, and what this means to them.”
Katie Johnston works as a registered dietitian on the Irish Cancer Society Liam Mc Trial.
“I feel so privileged and lucky to be in my current role, working with these groups of men. Diet can be a bit of a buzz word in the world of cancer and survivorship, with some patients avoiding certain foods or even food groups for various reasons. But we know that the research shows the crucial role diet can play in cancer prevention, during cancer treatment and during survivorship, so for this reason diet education can be a vital tool for patients and survivors.”
“I hold five education sessions with the men over the twelve-week programme and I also hold one-to-one personalised nutritional counselling, if required. The education sessions follow the World Cancer Research Fund recommendations for Survivorship.”
“Many of the men I am currently seeing are on androgen deprivation therapies (ADT) which can have a big impact on body composition, such as increasing fat mass and decreasing muscle mass. We assess every man’s body composition at the start and end of the programme through novel tools such as bioelectrical impedance analysis and ultrasound. We measure their hand grip strength, waist circumference, fat mass and muscle mass. It’s wonderful to be able to provide these men with this state-of-the-art care.”
“From my experience, there is a lot of nutri-babble out there, particularly online. I see patients reading a headline or seeing someone on social media sharing health information, or more commonly, misinformation, which can influence their choices around diet. This can lead to avoidance of important food groups, such as dairy - which is important for bone health and a valuable source of protein. I am also seeing the rise of herbal and botanical supplement use, which can cause gastrointestinal symptoms as well as having potential harmful interactions with prescribed medications. This market and its products are unregulated, and there is a lack of evidence for their use, which is commonly omitted from information we see online.”
“During the sessions with the men, we hope to give them back control when it comes to their diet. We want them to feel empowered to make their own informed decisions and positive choices when it comes to nutrition.”
“The team works so well together, as a multidisciplinary team, to help manage any problems the men might be experiencing, with each healthcare professional bringing their unique expertise, skills and perspective to the table.”
“In routine clinical practice, healthcare professionals tend to work in their own silo. However, in the Liam Mc trial, the patient is the central focus, and the healthcare professionals work collaboratively around the patient to meet their needs. The intervention has already proven to me the positive impact that health care professionals can have to survivors, their wellbeing and their quality of life.”
Martin O’Sullivan is a PPI representative on the Irish Cancer Society Liam Mc Trial.
67-year-old Martin O’Sullivan from Mitchelstown, County Cork is a PPI representative on the Irish Cancer Society Liam Mc Trial.
“In 2018 I found out I was BRCA positive. There had been a number of cancer diagnoses in my family. Through genetic testing we discovered that the BRCA gene mutation ran in our family and because of this we were all offered free testing for the gene and it was through this test I discovered I was positive.
“It was around this time that my GP noticed my PSA levels were slightly raised. I was sent to the Rapid Access Clinic in Cork, here I had a biopsy taken. When my results came back, I was diagnosed with prostate cancer. I ended up having a prostatectomy”
“Two years later in October 2020 I was out cycling one Sunday morning, when I fell off my bike. I ended up fracturing and dislocating my shoulder, I needed surgery to repair the injury.
“I was scheduled to go home after the operation on Wednesday when I was told I would need further scans because of something the very alert radiologist had noticed. This led to the discovery of a tumour in my lung. Subsequent scans on the rest of my body discovered that I also had a tumour in my kidney.
“The next number of months were filled with surgeries and treatment. In December 2020, I had a portion of my right kidney removed, by February of the next year I had the tumour removed from my lung. In April I had the upper left lobe of my lung removed. When the surgeries were completed I then underwent chemotherapy, which finished up in August 2021.”
“Since then there’s been no new surprises, thank god. I am on an oral chemotherapy therapy tablet, I am also still getting checked and scanned on a regular basis.”
“I was approached about being involved in the Irish Cancer Society Liam Mc Trial. When I thought about it, I knew so many people who had been so good to me during my experience. I wanted to give back, so I just couldn’t say no.
“When you are in hospital and you know you are in the system, you feel there is a level of safety. You know you are being monitored and looked after. Once you leave that system it can be difficult to readjust to normal life without the constant support treatment offers. The support that the Irish Cancer Society Liam Mac Trial offers can be of enormous benefit to those dealing with the aftermath of cancer.
“Everybody’s circumstances are so different, from your personality, to education or support levels from loved ones. Often people can still be really struggling down the road, particularly with issues like anxiety.
“I am two years post treatment but I still recognise the benefit of support during and after your cancer treatment. Anything that can provide a little bit of help during this difficult time, is a wonderful thing.
“I feel privileged to be able to share what I have experienced, found and felt so far in my journey with the team behind the trial in the hope of making life better for more patients in future”
Anne Marie Cusack works as the clinical research nurse on the Irish Cancer Society Liam Mc Trial.
“My main role is supporting my colleagues who are providing the intervention, but I also support the patients who are taking part in the programme."
I handle the recruitment of the trial, reviewing all applications and ensuring they meet the criteria. Inclusion and exclusion criteria determine which members of the target population can or can't participate in the research study. I will then reach out to the patients, I am their first point of contact and their main point of contact for the 12 weeks of the intervention. I tell them all about the study and answer any questions, I then organise a pre-assessment.”
The Liam Mc Trial is currently working with its second group of men, Anne Marie says that the impact has already been incredibly promising “It’s a fantastic project to be involved in, it’s a big commitment for these gentlemen, but you can see they get so much out of it.
“With this study, we develop relationships with each man and are able to give them lots of time and attention, everything is tailored to them. As the weeks go on, it’s incredible to see the men start developing friendships with each other and really opening up. They learn from each other and get comfort from someone going through something similar, this helps combat some of the loneliness they feel.”
“Some of the men were diagnosed with cancer during the covid pandemic, the impact of this has been great, and many feel quite traumatized. You can see they really appreciate getting back to the human element of being a part of the trial.
“We feel grateful to be able to give them the tools to go forward and improve their quality of life.”
Gerard Ingoldsby is a PPI representative on the Irish Cancer Society Liam Mc Trial
Gerard Ingoldsby was diagnosed with bowel cancer in 2005, aged 42. He is now part of the Irish Cancer Society Liam Mc Trial team as a PPI representative. Gerard uses his own personal experience of cancer to help inform the research project.
Gerard says “As strange as it sounds, being diagnosed with cancer was actually a huge relief, as it finally explained the rectal bleeding and other bowel problems that first began in 2003, although a colonoscopy back then revealed nothing.
“Over the next 18 months my symptoms worsened and in January 2005 a second colonoscopy found stage 3 cancer in a large polyp in my lower colon, and it had spread into my lymphatic system. I was extremely lucky that it was found when it was. Early detection probably saved my life.
“If I hadn’t listened to my body and acted when I did, I might not be here today to tell the tale. In order to shrink my tumour I underwent daily radiotherapy for 4 weeks, combined with daily chemotherapy for the first and fourth week. I found this treatment extremely difficult but it ensured that the major bowel resection surgery which followed left me with just a temporary colostomy bag, which was reversed 4 months later. I completed a further 26 sessions of weekly chemo in April 2006.”
“But I found the months immediately following completion of all my physical treatments even more traumatic, when the full psychological and emotional impact of my cancer finally hit me.
“Gone was the secure feeling of the hospital environment, replaced by feelings of isolation and severe anxiety and questions like ‘what now’. I felt I was left adrift at sea.”
“I sought support, going through counselling and taking up Tai chi and Qigong. I found this hugely beneficial. Thankfully, 18 years on from my diagnosis I am doing very well, and while the fatigue can still be difficult, I now know how to manage it much better.”
“Being involved in the Irish Cancer Society has been a huge part of my life since my diagnosis. For more than 10 years I was a Peer Support Volunteer with the organisation, in the hope of making someone else’s journey that little bit easier.
“Giving back in this and other ways is very important to me, because if I myself had spoken to another survivor who could appreciate exactly what I was going through, I could have been spared a great deal of suffering.”
“I am also delighted to be involved as a PPI representative with the Liam Mc Trial. It really appealed to me. Having the project based here in Cork, where I myself live, is great for the area. I was also excited about what the trial can do for men affected by cancer.
“I can see what they are hoping to accomplish in the trial, and how they want to make use of tools that really benefited me during my experience with cancer. Men can sometimes be the worst of patients, so having this safe space for them is wonderful.
“The team have also created a social aspect, which has the additional psychological benefit, allowing those taking part to feel less alone.”
“The work they are doing is also transferrable to people diagnosed with many other cancers, with a bit of tweaking of course. It really has huge potential. Long term, it would be wonderful to have a project like this available in hospitals all around Ireland.”