When Sue (not her real name) was asked about being interviewed about living with metastatic breast cancer, she wanted to remain anonymous, not only because she hadn’t told some people that she has the disease, but also because she doesn’t want to be seen as ‘the cancer person’ along with all the gushing and sympathetic looks. “I don’t associate with being sick, I want to get on with my life.”
But, it wasn’t always this way for Sue, when she received her diagnosis in November 2019, she was absolutely devastated and had an extremely tough first two months when all she could think about was that she was dying and what was the point of doing anything.
“I needed new white t-shirts, but thought, what is the point, I’m dying. I thought I would have to give up any work and move house because I wouldn’t be able to keep up with my existing house. I wallowed in the death sentence for a couple of months,” said Sue.
Following some counselling, the organisation of her treatment plan and getting a few lifestyle things in order, Sue said that she started to get her perspective back. “I shifted the way I thought about the disease thinking ‘I am not dying from it, I am living with it.’ Worrying is a wasted emotion and there is nothing that I can do about it, so I may as well keep myself as healthy as possible and keep living.”
Sue was diagnosed with breast cancer initially when she was 40 years old despite no family history of the disease. She went through a lumpectomy and full axillary lymph node clearance as well as chemotherapy and radiation therapy.
And everything was fine until in November 2019, when she had a severe pain in her ribs and ended up in St. Vincent’s Emergency Ward where they thought it might be her spleen. Following a CT scan, they could see that her liver was inflamed. Following some more tests, the emergency room physician came in ashen faced and explained that in fact her breast cancer had metastasized.
Following ten months of taking Palbociclib and some shrinkage in her tumours, the tumours started coming back and she was referred to Professor Sarah-Jane Dawson and the Breast Cancer Trials’ CAPTURE trial.
The drug alpelisib is a class of drug called a PI3K inhibitor which can inhibit the growth and survival of cancer cells with a PIK3CA mutation. The CAPTURE trial hopes to determine whether individuals with breast cancers that have the PIK3CA mutation will be more likely to benefit from treatment with alpelisib, in combination with fulvestrant, compared to standard treatment with capecitabine.
The main side effects of treatment for Sue have been on her hands and feet which are very tender and dry and they get aggravated by water. This means that she needs other people to help with gardening and washing occasionally. And she did have some initial stomach issues when she would get gastro, but with a reduction in her dose and being very careful with what she eats, this has subsided.
One of the key things that Sue has said has helped is being able to set herself up so that she is financially secure. She was able to get some financial advice for people with a terminal cancer diagnosis and got an insurance claim around income protection and she was also able to get early access to a lump sum from her super fund. This has meant she hasn’t needed to worry about money, which has helped her focus on keeping herself well and living her life.
Sue’s recommendations to people who have been diagnosed with metastatic breast cancer are to get your ‘ducks in a row’, get advice about your finances, get counselling, recognise that you are definitely going to wallow for a few months following the diagnosis, but that things do ‘go back to some sort of normality.’ She continues that you should ‘gather round the people that love you and fuck the rest of them.’
Sue’s very keen to travel overseas to see her family. The pandemic has put those travel plans on hold for the time-being, but Sue is certainly living her life and plans to travel as soon as she can.
To learn more about metastatic breast cancer, available treatments and medical trials, Breast Cancer Trials is holding a free virtual Q&A on Monday 7th February 2022 from 5-6.30pm featuring Professor Sarah-Jane Dawson from the CAPTURE trial, other experts and metastatic breast cancer patients. Go to https://www.breastcancertrials.org.au/qa-events to register for this free event and submit a question for the expert panel.
