Clinical Trials Day

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,).  Before I knew it I’d reached the end of the treatment road, and was told by my oncologist to ‘get my affairs in order’.  

But it seems that life had different plans for me, and after returning from our ‘last’ family holiday in New York he offered me the remaining slot on a very small phase 1 clinical trial in Glasgow.  I had nothing to lose, hoping I might get 6 months to a year of extra life on it, rather than going back onto chemotherapy.  Miraculously I’m still here 6.5 years later, taking the same 6 little yellow pills daily.  I’ve experienced many milestones that I thought I would never see – eldest sons going to university, daughter reaching high school, and lots of amazing family holidays.  Despite some cancer progression in my lungs, I have been allowed to stay on the same drug as part of a compassionate use access scheme. 

In the last 6 years when I’ve spoken to other patients living with the disease, I realised that I was in the minority and nobody else had been offered or managed to access a trial.  Patients told me they thought a trial was a ‘last resort’, that they would be given a placebo or be viewed as a guineapig – these were myths that I kept hearing.  They didn’t know that a trial could offer them hope and potentially another line of treatment.  

When I joined Make 2nds Count to look after research, I decided that the priority was to change patient misunderstandings about clinical trials. As a result, Make 2nds Count have funded two important projects – the Patient Trial Advocacy Service which matches patients to trials, and the MSBC Trials Survey which has given us the data we need to advocate for change in this area amongst key groups.

My advice to anyone living with advanced breast cancer is to say right from the start to your clinician that you’re interested in clinical trials, and to advocate for yourself.  If you’re in Scotland you can also refer yourself to our Patient Trial Advocacy service, run by very knowledgeable and empathetic nurses, and we plan to open this service up across England in Q3/4 of 2022.  You have nothing at all to lose, and like me, will get access to a novel drug that will give you hope and perhaps enable you to hit all those milestones, as mine did.