Tara Boyle is an NCRI Consumer Member of the NCRI Sarcoma Group. In this blog, she shares her experience of a sarcoma diagnosis and how this led to an interest in cancer research. On this, World Cancer Research Day, Tara talks about her role as a patient representative and how, as a patient representative, she supports research to prevent cancer and catch it early.
It was approaching summer, and something was not quite right. I was 42 and usually had no reason to contact my doctor, but I made an appointment to discuss how I felt. My symptoms were nothing too concerning to my GP, but I knew that something really was not right. To cut a long story short, after a few short weeks, several trips to A & E and some investigations, I was told that I had stomach cancer: leiomyosarcoma, to be precise.
Even though I worked in cancer services within my local health trust, I had never heard of this. Everything moved quickly, within two weeks I was in for surgery and had a sub-total gastrectomy (4/5th of my stomach removed). Recovery went well; the nurses and doctors were amazing, and the AHP team had me back on my feet and eating small portions within days. On follow-up 2 weeks after discharge from the hospital, I was given the positive news that the surgery had been successful and that all the cancer had been removed. No further treatment was necessary. I am so thankful to everyone who was involved in my cancer journey. Overall, it was a very positive experience, and I am so grateful to those closest to me, who were there every step of the way, and helped keep my spirits up.
Within a few months, I was back at my work in the Macmillan Support Centre. Over the duration of my cancer diagnosis, I had read a lot about cancer, sarcomas in particular (it is one of the rare cancers) and the impact of cancer research on improvements in diagnosis and treatment.
One day a poster arrived for display in the Centre. It was an advertisement for people with lived experience to become involved in the Northern Ireland Cancer Research Consumer Forum. The forum is integral to the work of cancer research in Northern Ireland and has influenced the changing culture of cancer research, which now fully embraces Personal and Public Involvement (PPI).
This triggered an interest in me, and I got in touch. A lovely lady, Margaret Grayson (MBE), described as a trailblazer in PPI in cancer research in NI, came to meet me, and she really sold the forum to me. I joined this forum and have been part of it for the past four years.
As part of the forum, I am part of a group that works in partnership with cancer researchers by reviewing clinical trial information and helping raise awareness of clinical trials. It was via this forum that I was introduced to NCRI and the NCRI Consumer Forum, and I became a Consumer member of the NCRI Sarcoma Group in 2020.
I know that research played a big part in the diagnosis and treatment of my cancer, and although I was not involved in a clinical trial myself, I know that by contributing, you are making a huge impact. Being part of a clinical trial is something of the unknown, but it allows research to be advanced and treatment to be tailored. Research is fundamental in understanding this disease and how cancer treatments affect people in different ways.
Over the past four years, I have been involved in reading clinical trial information from a patient perspective. This brings huge benefits to the researchers, and I have found that they really appreciate any feedback given and incorporate it into their work.
I have been privileged to work on several studies, including a recent Oxford University study on hormone replacement therapy (HRT) and the risk of cancer, where a small group of patients provided insights to help guide both the research itself and also how the findings of the research are communicated to people.
There is an abundance of support offered to people who are on clinical trials, and treatment can be tweaked to minimise any side effects.
I am keen to emphasize the importance of early diagnosis and getting symptoms checked out as soon as possible. I know it is cliché, but you know your own body.
I also want people to know that today, on World Cancer Research Day, the volume and variety of cancer research that is going on. I have huge admiration and respect for people who volunteer to participate in cancer clinical trials. They are vital in the research to find better ways of preventing, diagnosing and treating cancer.
As a person with lived experience, it is encouraging to see, that even over the past two decades, research has helped advance knowledge of cancer and how to treat it, giving valuable extra time to patients and their loved ones, including improved quality of life.
Today as we celebrate World Cancer Research Day, I want to thank all those involved in research.