‘Metastatic breast cancer remains mostly incurable and I honestly thought I was going to die’

Three years ago, Siobhán Gaynor was diagnosed with secondary breast cancer. “In early 2019 I noticed that my right nipple had started pulling inwards and contacted my GP as I knew this was a potential indicator of breast cancer. But I was also aware that the vast majority of self-found changes to the breast, along with my age (51 at the time), meant the odds of it being breast cancer were low.

“But unfortunately, the odds did not work in my favour and after a referral by my GP to the breast clinic and subsequent tests, I was told that I had primary breast cancer. I was referred for a lumpectomy and decided to proceed with chemotherapy and radiotherapy.”

The former research scientist was “upbeat” during her treatment and returned to work in January 2020, happy in the knowledge that she had “done everything possible to become cancer free”. She was determined to focus on recovery and get back to normal as fast as she could.

[ Most women diagnosed with early breast cancer ‘will survive long-term’, study finds ]

However, a few months later, she began to feel very tired and experienced back pain, which became increasingly worse – so she began to fear the worst. “I had educated myself on the signs and symptoms of secondary or metastatic breast cancer but knew that in 70 per cent of cases, the cancer does not return,” she says.

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“However, the odds were not in my favour again and, in October 2020, it was confirmed that my breast cancer was now metastatic and in a number of sites in my back and hips. This news was traumatic, to be told, that after all efforts – both on my part and that of my medical team – the cancer had spread, was devastating for me and my family.

“Metastatic breast cancer remains mostly incurable and I honestly thought I was going to die – and soon – and I actually don’t remember a whole lot about those first three months post diagnosis as the shock made me numb and very anxious about what lay ahead.

“I had more questions than answers and knew I was going to need support – but luckily a friend mentioned the Positive Living Support Group run by the Marie Keating Foundation, which has been my lifeline. We are a group of women with the same diagnosis and we support each other on this journey. We all understand what each other is going through and cry, laugh and have fun together. Others may not understand but we all just get it.”

My anxiety is now manageable and fatigue is my sign to rest. I had to give up working and medically retired in January 2022 – it was also not something I welcomed, but it was necessary

Gaynor was put on a course of oral chemotherapy and hormone blockers as the cancer subtype is “oestrogen driven”. She also had two courses of palliative radiotherapy to alleviate the severe back pain she was experiencing – and was prescribed seven different tablets, which she takes daily, along with monthly injections and blood tests to ensure that her body is coping with the medication.

For the first year, she suffered with pain, fatigue and anxiety, but the combination of medication and radiotherapy, combined with exercise and counselling, has helped to reduce symptoms.

It has been three years since her diagnosis and, thankfully, her cancer seems to have remained stable. “I am still on the same medicines and get scanned every three months to check the cancer status. My anxiety is now manageable and fatigue is my sign to rest. I have managed to work out what I want to focus on and continue to take trips and get involved as the patient voice in medical research, as well as spending more time with friends and family. I had to give up working and medically retired in January 2022, and that was a big change – it was also not something I welcomed, to be honest, but it was necessary.

“I regularly chat to others who are newly diagnosed, and my advice always is: ‘Take a breath, slow down and accept the diagnosis, seek out support and information and also work out what’s important to you.’

[ The push to understand metastasis: new frontier in cancer research aims to improve survival rates ]

“Metastatic breast cancer is currently considered incurable, but thanks to new treatments, we are living longer, so the need for better supports and information is vital. In speaking to fellow patients and medical oncology teams, it was clear to me that there was a gap in what was needed to best support us and what evidence was available. As a scientist, I believe that the best way to figure out where to go with this lies in research and evidence. So I joined Cancer Trials Ireland as a patient advocate in 2021 and I have witnessed the willingness of the Irish medical cancer community to listen to our voice as patients and the importance of patients in shaping the research and support agenda.”

The Dubliner has spoken to many patients and healthcare professionals, who confirmed that a gap in knowledge was “real and troublesome” – as patients wanted more information, which wasn’t always available. “Based on conversations I had, I pulled together a list of over 20 areas where gaps arise, and then, with the assistance of a professional steering committee and other patients, we developed a shortlist of 10 areas which were considered by the majority to be the most impactful.

“Prof Séamus O’Reilly, consultant medical oncologist, Cork University Hospital, kindly agreed to join me on the endeavour as co-chief investigator, and his support, knowledge and networks have been instrumental in setting the survey on the right scientific and credibility footing.

“The data generated from this survey will be published in the scientific literature, and we will develop a series of recommendations for supports and services to be developed for Irish advanced breast cancer patients. So, by completing this survey, Irish metastatic breast cancer patients will help to develop the supports and services which they and others who may follow in our footsteps require, as well as making health professionals aware of the aspects of our care which we consider important.

“The survey represents the first time a patient-led piece of research has been developed by Cancer Trials Ireland. Patients are considered experts on their own diseases, and it is fitting that that the survey is truly patient led. We are looking to recruit over 300 Irish metastatic breast cancer patients across the island of Ireland and we hope to have completed in six months, with a publication in 2024. The survey, which is anonymous, is online and should take 20-30 minutes to complete. But there are some tough and emotional questions in there, so I would urge you to set aside 30 minutes for yourself and take the time to complete for your own benefit and for others in the future. I appreciate that our time is valuable as patients, but to ensure that the voice of all Irish metastatic breast cancer patients is heard, your contribution to the survey is invaluable.”

We believe that this will assist us in our mission to improve cancer care for all patients

—  Prof Séamus O’Reilly

(Anyone with experience of secondary or stage four breast cancer, and who would like to share details of their experiences, can take part in the new research survey being co-ordinated by Cancer Trials Ireland. The survey is available online at cancertrials.ie and is funded by the Irish Cancer Society.)

The development of the survey has been overseen by a steering committee with experts in psycho-oncology, palliative care, social care, radiation and medical oncology, and, of course, patients. More than 30 patients with secondary breast cancer were also involved in developing the survey, which has undergone a scientific and ethics review process by the Royal College of Surgeons in Ireland.

Prof Séamus O’Reilly says the study is very important and will also help patients who have other types of cancer. “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. 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 wellbeing and symptom control.

“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.”