'We are invisible': Survey finds gaps in treatment of women with advanced breast cancer
'the Of Than With More Different Alike Patients ' Experiences Is Siobhan Different Gaynor: Cancers
Women with advanced breast cancer are living longer thanks to better treatment but they are “invisible” in services which could support their changed lives, a patient and scientist has warned.
Siobhan Gaynor identified “shocking” gaps in care through her own treatment and now through a survey carried out with Cancer Trials Ireland.
She found one in five women cannot pay their monthly bills and 87% face mental illnesses, including depression, following breast cancer. This study is focused on women with metastatic breast cancer, also known as advanced or secondary cancer.
“I’m four years diagnosed now,” she said.
“I had gone through primary breast cancer treatment in 2019. Unfortunately, then less than a year after finishing treatment, I was diagnosed metastatic with secondaries in my bones from breast cancer.”
She praised her initial treatment, especially how medical care was part of a package of supports.
“You feel very comfortable as a result but I was really shocked when I was diagnosed with metastatic to realise that’s not happening, there’s none of that. We are invisible, that is the problem.”
The survey was completed by 246 patients between July and October last year.
- 77% wanted more information about their prognosis
- 68% said more support is needed for cancer patients in menopause
- 83% wanted easier referrals to palliative care for pain management
She said this really surprised oncologists when she presented it to them.
Women were also so ill that one in four had been to a hospital emergency department in the previous six months as they could not get help elsewhere. Ms Gaynor said the findings indicate the need for national guidelines, dedicated clinics, and a website with this information.
She pointed out this could easily apply to other cancers as well. “The experiences of patients with different cancers is more alike than different,” she said.
“And that is where I’m going with my work to highlight that for advanced cancers there is quite a strong commonality in our needs.”
The survey, published in journal Science Direct, was also supported by Professor Seamus O’Reilly at Cancer Trials Ireland and Cork University Hospital.