Having just completed screening for a clinical trial I must initiate this discussion. Trials offer treatments not otherwise available – so with limited treatments available, it’s without question that I consider clinical trials. However, researching, discovering & getting on a trial is not without tribulation. As a nurse I am confident to research & question clinical staff but this shouldn’t be necessary – clinical trials discussions should be offered as standard. Instead, more often than not, when there is progression, patients are moved onto the next standard treatment. Considering trials have strict eligibility criteria, patients can miss a window of opportunity: by having a specific drug, by having mets in a certain place, having specific side effects, their general health being too poor or having had too many treatments – all of these are reasons you can be rejected for trials. This must change, clinical trials should be considered routinely as options for patients.
The challenges do not stop there – if you choose to look into trials you often have to look on your own – yes, some clinicians will support you, but not always. They may look within their “clinical catchment area” but may not look further afield – why? I don’t know, perhaps they think we wouldn’t travel that far (surely that’s our choice?!), perhaps they don’t want to have to do the external referral – perhaps they themselves don’t understand enough about trials. So, if a patient looks for trials themselves there must be an official resource with guaranteed access to all relevant trials, right? Wrong. I did a very crude search to emphasise this point – the NHS website directs you to the National Institute for Health & Care Research. Here, I completed 3 searches – Metastatic Breast Cancer, Secondary Breast Cancer & Stage 4 Breast Cancer. The searches returned the following results for clinical trials – 1,0 & 0 respectfully. I did the same searches on the Cancer Research UK website – returning 485, 517 & 2784 results! Here I could filter the results but only as far as “breast cancer”, the results were relatively unchanged, but many were inapplicable to MBC/SBC/Stage 4 breast cancer!
Thankfully, METUPUK provides a database of trials that is frequently updated – but this is only down to the sheer hard work of our member Kat who continually reviews all other databases then populates the METUPUK one to try and provide a comprehensive source. Why does this need to be done by a charity – by a volunteer? It’s simply unacceptable.
If and when you do get onto a clinical trial, there is a plethora of screening to undergo prior to even being told if you are eligible to start – usually several weeks off treatment to allow a “washout” of drugs from your system and complete screening. I’m lucky – I will probably “only” have been off treatment for 4-6 weeks when I start. Many wait months – whilst cancer is free to do as it pleases. There are women who have been told there are no clinical trial options available to them. They have then researched themselves and been accepted on to a trial elsewhere – one influencer is currently having great success on a trial she found and accessed herself having been told there were none available to her! This blog is nowhere near enough to even begin to dissect all of the tribulations of trials – I have tried highlight the major issues. We must make trials easier and quicker to access, we must start to consider them as a treatment line in itself – not as a last-ditch resort when other lines have failed – because by then we are often ineligible.
The Hippocratic Oath has changed over time, it varies throughout the world; throughout the country – but the fundamental principles remain – the first being “do no harm”. I would argue that by not helping patients find ALL options of treatment available to them – by not advocating trials as an option – that they are indeed, doing harm. I don’t know if my new treatment will work – but with limited options available I must be bold and give it a try.
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Helen Crawford
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