Ann is lively, open, honest, dynamic, determined and very, very busy!
She has secondary Breast Cancer, diagnosed 2 months after being discharged as “cured”.
Ann was one of the lucky ones, she was told: diagnosed during a routine screen, she could have been the poster patient for the advantages of early detection because a very tiny tumour was caught so early that there was almost nothing to recover during a lumpectomy – most had been removed in the biopsy! She had endocrine therapy for 5 years and thought it was over. “I thought cancer made me live a better life, I did believe I was lucky”, Ann said to me.
Then two months later she had some shoulder pain. “When the cancer came back, my outlook was very different. My world collapsed”.
Ann is an activist, and an inspiring one at that.
Following what felt like the “rug being pulled from under her feet” she asked herself how was she not made aware of this possibility? While the large majority of breast cancer deaths (over 300 per year in NI) are due to metastasis, a recent survey shows that a significant proportion of patients are unaware of this possibility. Ann is a knowledgeable patient and accessed her medical records, and while her case is exceptional, it is not unique. For some patients, early detection is not enough, and more research into these cases is urgent. As a woman researching metastatic breast cancer, this was one of the most moving interactions I have had with a patient: only 5% of funding goes to metastatic cancer research. Ann knows this as well as I do.
She has researched and mobilized. She joined the NI Cancer Research Consumer Forum, liaises with charities, campaigns for awareness and access to clinical trials. She was incredulous that the 144-page draft NI Cancer Strategy document had dedicated only ½ page to metastatic cancer.
We are definitely lucky to have Ann speak up for HOPE. Science needs to be communicated, translated, implemented. That was the message I took with me.
“At present the mental side is markedly worse than the physical side. To manage the mental side, I look to new medical research and advancements from across the world and this gives hope. And hope is very important when dealing with the mental distress of living with an incurable disease with an average 2-to-3-year life expectancy“
Read below from Ann, in her own words.
“Two months after discharge from Oncology Services and stopping endocrine therapy, the breast cancer had metastasised to both lungs and thoracic lymphatic system. I had a navigational bronchoscopy by a surgeon specialising in thoracic surgery and lung cancer, who uses minimally invasive surgery/techniques. The surgeon had returned from London and had commissioned a new piece of kit for use within Belfast Trust. He was the only clinician in Ireland who could carry out this technique. He explained the low success rate of getting viable biopsies due to the newness of this approach locally, but in my case he was successful in getting a viable biopsy."
"This is so important because it helped refine my treatment to the biomarkers of the secondary tumours, instead of having a treatment plan based on original biomarkers (these can change when tumours go from the breast to other organs). Getting confirmation biomarkers gave me great reassurance regarding my treatment plan and reduced my stress considerably. This demonstrated the benefit of having leading edge clinicians who are at the top of their game, and who, on coming back to NI, stepped up to commission new technology to continue their expertise and share their learning.
I also feel somewhat fortunate because, despite having the aggressive HER2+ breast cancer subtype, I know from my own research that there have been great advances in the treatment of this subtype, with excellent results in respect of new SACT regimes such as Trastuzumab Deruxtecan (Enhertu) and Tucatinib, both of which are approved for use in NI.
Reassurance that you are receiving the optimal treatment and care is important for patients with metastatic disease. Clinical audits aim to reduce unwarranted variation in clinical practice and improve care quality and outcomes, and as a result ensure optimal secondary breast cancer care. England and Wales announced that they were commissioning a clinical audit for secondary breast cancer in May 2021. No such audit is being commissioned for NI or Scotland, leaving us behind the rest of the UK. I am currently campaigning for this important improvement tool which would benefit all patients living with secondary breast cancer and those that come behind. It will also be of great value to clinicians, healthcare providers, the Department of Health as commissioners of cancer care, and charities supporting patients with secondary breast cancer.
I have remained stable for almost three years now and have not had any progression. My ECHO scans show improvement which I put down to keeping active.
I am a firm believer in the benefits of exercise to keep the body as healthy as it can be whilst living with stage 4 cancer on active treatment. I believe it has many benefits both physically and mentally. It certainly helps me manage the side effects of treatment, and clears my head.
At the beginning of the covid-19 pandemic I did a 12-week online fitness and strength-based programme with a physical activity coach funded by Friends of the Cancer Centre. I then enrolled on a 6-month research trial with University Hospital Southampton called Safefit. I had a dedicated Cancer Rehab coach and we set short-, medium- and long-term goals and together we developed a programme to achieve these. We met virtually 3 times a week for the first month, once a week for the next 3 months and then once a month for the last 2 months. I benefited greatly from the programme and achieved all the goals, including a mountain hike, a 15k walk and lastly a 5k run.
I then got a place on a breast cancer exercise retreat with ABC Diagnosis outside Manchester. The weekend retreat involved running 5k, Nordic walking up 2 peaks on Saddleworth Moors and yoga.
I have now joined a Nordic Walking class and do a long walk with the group every week. I have joined Ormeau Runners and have just completed the VHI Women’s Mini Marathon in Dublin. I attend Park Run in Ormeau Park most Saturdays, and always go to the 5kYour Way - Move Against Cancer on the last Saturday in the month. I have joined Lagan Dragons and been out paddling a few times and intend to go out more. I enjoy yoga and practice a few times a week."
Secondary breast cancer completely changes your life. You live daily with uncertainty and the fear of progression and death. Your focus is planning to live your best life, whilst also planning your death.