New survey aims to explore experience of breast cancer patients

Siobhan Gaynor, a member of Cancer Trials Ireland Patient Consultants' Committee, was treated for breast cancer in May 2019, but diagnosed with secondary breast cancer in October 2020 which she said is “currently incurable”.

Siobhan Gaynor felt “traumatised, afraid and lost” on hearing she had an incurable form of breast cancer, and is now working with Cancer Trials Ireland researching gaps in non-medical care.

A survey on patient experience, launched on Monday, is the first Irish patient-led research to undergo rigorous ethics and scientific approval, backed by medical experts. Ms Gaynor, a former research scientist, was treated for breast cancer in May 2019, but diagnosed with secondary breast cancer in October 2020 which she said is “currently incurable”.

Despite this, she wants to help find solutions and is a member of the Cancer Trials Ireland Patient Consultants’ Committee and co-chief investigator on the survey. They hope to work with 300 women whose breast cancer has spread (secondary or metastatic breast cancer).

“Once I finished active treatment for my initial diagnosis of primary breast cancer, I was more than happy to move on with a renewed sense of how precious life is,” she said.

“Receiving the news of secondary breast cancer, and knowing that it is currently incurable, was a completely different animal to deal with. It left me reeling. Suddenly having to confront my own mortality, I felt traumatised, afraid and lost.” 

She found little information however on some issues. “For me, coping with my secondary diagnosis, there were clear gaps in areas such as access to information and emotional support,” she said.

“I wondered ‘do I tell my family?’, ‘how long will I live for?’, ‘how much will it cost me?’. I had lots of questions but few answers. Yet, I was struck by the fact that there was very little by way of scientific research into these most difficult and upsetting aspects of my care.” 

She said it is vital these real-life experiences are recorded. The survey includes questions on finances, fertility, sexuality and palliative care. She hopes the findings can help “develop new health and psychosocial services and resources”.

Prof. Seamus O'Reilly said: “While secondary breast cancer has the highest prevalence of all stage IV cancers, we anticipate that the outcomes of this work will also inform other patient-led research for stage IV cancers such as prostate, colorectal, and lung.” 

Co-chief investigator and oncologist at Cork University Hospital Professor Seamus O'Reilly said the survey could also potentially influence how other advanced cancers are treated.

“This is the first time in Ireland that a piece of research has been developed by patients for patients with the same rigorous approach as a clinical trial,” he said.

“We believe that this will assist us in our mission to improve cancer care for all patients. While most secondary breast cancers are currently incurable, thanks to treatment advances, women are living longer. However, we also need a very clear focus on quality-of-life aspects, such as emotional well-being and symptom control.” 

He added: “While secondary breast cancer has the highest prevalence of all stage IV cancers, we anticipate that the outcomes of this work will also inform other patient-led research for stage IV cancers such as prostate, colorectal, and lung.” 

The survey is on Cancer Trials Ireland website.