MetUpUK member Connie sat down, on zoom, with some of her oldest friends to talk to them about their understanding of her life with MBC.
They discuss cancer types, treatment lines, tumor profiling, trials, survival rates, progressions, drug lines, and how all of this makes them feel.
In 2018 I was diagnosed with secondary breast cancer in my liver, I was 44.
I knew the survival statistics were grim, so decided from the outset, in order to outlive the 2 to 3-year median I’d have to embrace experimental drugs and treatments.
I made this clear during my first oncology appointment, telling my doctor I was keen to sign up for clinical trials right from the start.
Under NICE rules, I would not be eligible to receive the medication that I am currently taking for my metastatic breast cancer on the NHS. I have been on my current drug regime since 2017, I am feeling really well, my disease is stable, and my scans are clear.
I began taking Palbociclib over 3 years ago, badgering my Oncologist and accessing it through a free trial set up by Pfizer. The trial was designed to sway NICE into approving the drug for NHS use, despite it’s high price.
I have been living with secondary breast cancer for 7 years, and am very aware that I’m one of the very lucky ones as the median life expectancy is 2-3 years. The general public perception of breast cancer is that it’s ‘sorted’ – eg if you get it you will be fine. But few people realise that when it metastases (spreads) to the organs as mine has, it cannot be cured. It is the biggest killer of women under 50 with over 11,000 women dying of it every year in the UK.
Stage 4 breast cancer with a pacemaker
Most people know someone with a pacemaker, and chances are that person will be elderly. The average age of a first pacemaker implantation in the UK is 72, but pacemakers are actually fitted in people of all ages from newborn babies to the very elderly. I was 39 when I had mine, which was needed as a complication after heart surgery to replace my aortic valve and root.
On March 22nd In Wales, the 20 page cancer delivery plan (CDP) had been replaced by a vague 3 quality statement. (QS)
The WHO recommends every nation should have a CDP and just like that Wales became the only nation in the UK without one.
I was diagnosed with primary breast cancer in April 2018. It didn’t come as a surprise to me as my mum had died from breast cancer a few years earlier having been diagnosed with primary breast cancer in her 30s.
MetUpUK Member Tassia discusses “Going Backwards. Cutting Corners for Breast Cancer Diagnosis”
I remember first hearing about genomics testing for cancer, about a year after my diagnosis of secondary breast cancer. I had failed on every line of treatment I’d been given, was fast running out of options, and looking for a lifeline
It’s not always easy to accept help and support. I was diagnosed with cancer in my early thirties when I was already struggling with a lot of feelings of failure.
