Category: Trials

When I was diagnosed out of the blue in March 2014 with advanced breast cancer, I never thought that I would be living with a good quality of life 8 years on. I’m Her2 positive, and spent my first 18 months post diagnosis rattling through all the standard treatments, (including an expensive self-funded spell on Kadcyla before it was approved in Scotland – and which didn’t work,).

When I was told in late 2015 that I’d secured the last place on a phase 1 clinical trial, I didn’t in my wildest dreams think I’d end up still on that trial almost four years later. I had been diagnosed de novo (another unnecessarily complicated medical term which means ‘from the start’) in 2014 with Her2 breast cancer that had already spread to my liver, lungs and bones – then a year later into my brain.

When were you diagnosed?I was told over the phone by my GP on Friday 13th Oct 2017 that it looked like my cancer was back after I asked for some tests on rib pain. I had no idea this could be a possibility!

When were you diagnosed?Feb 28th 2019 - was diagnosed with stage 3 ER+ breast cancer. March 13th 2019 - was told it had spread to my bones and possibly liver.

Bone Density Scans or Dual Energy X-Ray Absorptiometry (DEXA) scans, use a low dose of X-ray to establish the density (or strength) of bones. Bone density scans are used to diagnose or assess the risk of osteoporosis, a condition that makes bones weak and likely to break (fracture).

When were you diagnosed ? My original diagnosis was in July 2012 after a routine mammogram.

It has been widely reported in the last week that in the UK recruitment to clinical trials for cancer including secondary breast cancer have been stopped because of Covid-19. As a result, many stage 4 patients are missing out on potentially life-saving access to drugs that could keep them alive for longer.

The Impact of Covid-19 On Trials & Medical ResearchLast month, in the UK the NIHR Clinical Research Network announced it is pausing the site set up of any new or ongoing studies at NHS and social care sites that are not nationally prioritised COVID-19 studies. While this is of course necessary to enable the research workforce to focus on combatting the pandemic or redeployment to frontline care, the implications for secondary breast cancer patients are huge.

Why isn’t every patient with cancer offered a clinical trial? Why are my six little pills not available to every metastatic Her2 patient now?