Nothing about us, without us: The patient role in cancer research

A new podcast series is shining a light on gynaecological cancers that affect 1,400 women every year in Ireland. Bridget Carr, who was diagnosed with ovarian cancer in 2019, says sharing her experience as a patient advocate has been deeply rewarding

Fri, 12 Jan, 2024 - 02:06

Deirdre McArdle

Limerick woman Bridget Carr was diagnosed with ovarian cancer in 2019. At the end of 2018, she had discovered a cyst on her ovary. A surgery on December 21 revealed several tumours and the doctors removed both ovaries and fallopian tubes. In early 2019, Bridget was diagnosed with ovarian cancer.

A year of treatment followed, says Carr who is a mother of two. “After my official diagnosis, I met with my oncology team and they mapped out my treatment plan. I was scheduled to do six rounds of chemo, followed by surgery. At this stage, I didn’t ask too many questions; I didn’t know what to ask.”

Carr’s husband began researching the best possible treatment for ovarian cancer. He found a treatment in the Mater in Dublin, called HIPEC (hyperthermic intraperitoneal chemotherapy), whereby warm chemotherapy drugs are pumped directly into the abdomen. “We attended the Mater in Dublin and I was deemed a suitable candidate for HIPEC, and so my treatment plan was adjusted. I would now do four cycles of chemo, followed by surgery, then HIPEC, followed by six weeks of recovery, and my final two rounds of chemo.”

While this synopsis may sound neat, it wasn’t that simple. “There were delays along the way: I had a reaction to the first chemo drug, so we needed to manage that, and I had blood-count issues, which meant chemo appointments had to be rescheduled, but in September 2019 we were told there was ‘no evidence of disease’.”

Since then, she has been well, but the multiple surgeries and the treatment regimen have taken a toll. With her ovaries and fallopian tubes removed, Carr was thrust into menopause at 42.

She reached out to other patients who had a similar cancer. “During my hours of chemo treatment, I searched online for support groups for women like me. I eventually came across OvaCare, a community supporting women with ovarian cancer. It was at one of the OvaCare monthly meet-ups that I first became aware of PPI (patient and public involvement), when I met Adele Connor, who was doing a research project at UCD. She was interested in our experiences as cancer patients.”

Pictured (L-R) Dr John Coulter, Eoghan O'Sullivan, Breakthrough Cancer Research and Cancer patient Bridget Carr at the launch of a new podcast series on gynaecological cancers. Picture: Chani Anderson @capturesbychani

Carr had such a positive experience working with Connor that she wanted to become more active with PPI.

“Being involved showed me that my lived experience was valuable,” Carr says. “Doctors know everything about ovarian cancer, but they don’t know what it’s like to be a patient, and that’s where PPI can make a difference, whether it’s in research projects or clinical trials.”

Her next involvement was with the Irish Society of Gynaecological Oncology’s (ISGO) PPI initiative, ThisIsGO, a platform for women with gynaecological cancers, which make up 12% of all female cancers.

The website is a personalised resource that provides relevant information. “When I was first diagnosed, there was nothing like this in Ireland. Any information I was getting was from the US or the UK, so it wasn’t always relevant,” says Carr, who worked with ISGO to develop the content in the ovarian-cancer section of the website.

The ethos of PPI hinges on the motto ‘nothing about us, without us’. The growing influence of PPI in research, treatment, and support is changing the medical landscape in Ireland, giving patients a voice and ensuring that the patient experience is taken into account when decisions are being made.

For Carr, being involved with PPI is deeply rewarding. “It’s taken the worst thing that has happened in my life and turned it into something amazing.”

Carr’s PPI contribution has not gone unnoticed, particularly by ISGO. In December 2023, it presented her with the Laura Brennan Award, honouring outstanding achievement in gynaecological oncology patient advocacy and/or PPI in research.

“Bridget is a force of nature,” says Dr Dearbhaile Collins, president of ISGO, who is based in Cork. “As a result of PPI, the thisisgo.ie website is full of factual, tailor-made information related to a patient’s exact diagnosis. We’ve further built on the website with our new podcast series, which we hope will help us to reach more people.”

In development over nine months, the podcast series shines a spotlight on gynaecological cancers. It pairs expert advice and information on cutting-edge research and treatment with real-life stories from women who’ve experienced these cancers.

The series is presented by Dr Doireann O’Leary and sponsored by Breakthrough Cancer Research. Not surprisingly, the topics covered in the podcast were heavily influenced by a PPI group.

“The podcast series focuses on the patient experience, and it’s so important that we hear the patient voice throughout. We worked with patients to identify our six main topics, and our goal is to make this information accessible to as many people as possible,” says Collins.