By Melanie Costin
For some time now, patients like me have been hoping that there would be a simple test that could detect bladder cancer, something easy and that would hopefully not be invasive … maybe even a urine test. Well now products like this exist, urinary biomarker tests.
I won’t try and explain here all the ins and outs of how they work, please head over to our new webpage on urine tests (https://fightbladdercancer.co.uk/urine-tests) if you would like more information. However, recently I had my first experience with a urinary biomarker test, and I want to share this with others who might be navigating similar waters.
Embarking on a New Path
Along my journey with bladder cancer, I have often hoped for a more comfortable and convenient alternative to a cystoscopy as a way of monitoring my condition, so when I had the opportunity to try a urinary biomarker test for myself, I was keen to give it a go.
The Test Itself
The procedure for the urinary biomarker test was straightforward, especially compared to the more invasive cystoscopies that I usually endure. The entire process revolved around a basic yet crucial task: providing a wee sample.
The test arrived at my home, it was a small and discrete package, I’m not sure what I expected, but nobody would have had a clue of what was in there!
I was given clear instructions inside on how to collect the wee sample. Ensuring it was uncontaminated was key, so I followed the steps meticulously.
Getting it into the pot wasn’t that difficult, much easier than the one I’m usually given at hospital (very difficult for ladies!) This was helpful as it couldn’t be transferred from a larger pot, and I could do it at the beginning of having a wee, none of the mid flow stop and start that I am used to.
Once the sample was securely sealed in its airtight container, it was labelled… and then I put it in the fridge. I was assured that this is the best way to keep it, so that when the courier picks it up it lasts the journey well. I’d already booked a time slot for the pick-up from my home, this meant I could time when I did my sample. It would last a day in room temperature, but much longer in the fridge, up to five days, so there is definitely no need to panic if the courier is delayed, it will still be good to go.
Before the courier arrived I had to pack everything. I rather enjoyed this bit, everything I needed was included, I had foil strips to peel off, labels to add, there was even an absorbent pad to go in for catching any spills (I’d done it up so securely that nothing was going to get out, so fingers crossed)
“Knock knock” on the door, “hello Mr Courier”, and off it went to the laboratory for detailed analysis.
The simplicity of the process was a stark contrast to the invasive nature of cystoscopies. No waiting for an appointment, no invasive procedure, no drinking water madly afterwards, there definitely wasn’t going to be any chance of an infection!
The Emotional Impact
However, the ease of the test should be balanced by the tension of waiting for the results. I had no problems in this respect, but I can imagine someone newer to the game might find the waiting period an anxious time, it would be easy to spend the time pondering the possible outcomes…. Would the test detect any signs of cancer recurrence? How would the results influence my ongoing treatment plan? Isn’t this the way with bladder cancer in general though? Regardless of the procedure, it’s natural to think about the outcome, and not to let it overwhelm us.
During this time, I was aware of the importance of these results. Whilst the test itself was uncomplicated, there could be a psychological journey from taking the test to receiving the results, a mix of perhaps anxiety, uncertainty, relief… It highlights an essential aspect of healthcare: the balance between the physical procedures and the emotional experiences of patients.
Each step in the journey, no matter how clinically simple, can have a profound emotional impact.
Understanding the Results
I didn’t have to wait long, the results were delivered directly to me via email, and there it was, my score! 20! It was all very clear and with simple explanations of what it meant.
The score is:
“a measure of the overall methylation level of the Bladder EpiCheck biomarkers panel and ranges between 0-100. The test cut-off is an EpiScore of 60, meaning that all results equal to or above 60 are considered positive, and results below 60 are considered negative.”
Ok, so not everything was simple…what is methylation I found myself thinking!
A quick Google and I found that:
Imagine methylation as a tiny switchboard within our DNA, controlling which genes are turned on or off, much like deciding which lights to switch on in a house. However, things can sometimes go awry. In people with cancer, changes in methylation patterns can turn genes on when they should be off, or turn genes off when they should be on. Urinary biomarker tests can find these changes, offering a glimpse into our body’s inner workings.
I was left with a lingering thought, a score of 20 is below 60, so therefore all is clear, so why then is it not a score of 0? Maybe this is to be expected of a bladder cancer patient as opposed to someone who has never had bladder cancer? I found myself trying to interpret its significance on my own. Was this score indicative of a low risk of cancer recurrence, or was it a figure suggesting the need for further investigation?
Without guidance from your Urology team you might then find yourself turning to whatever resources you have in an attempt to work out the implications of the results, which could be a challenging task. This can be easily remedied by receiving a fuller explanation, but for now, I’ll take it as a clear result.
I discovered that, even for folks in fine fettle or those of us without an active illness, the levels of these biomarkers can naturally vary. This means that if your score sits below that all-important cutoff, it’s taken as a negative result, which is certainly a relief. It turns out, even in the healthiest of us, there’s a baseline presence of these biomarkers.
Reflections
Cancer surveillance is a high-stakes process. Wondering about the accuracy of tests and examinations is perfectly natural, regardless of the procedure. Stepping towards a future that promises less physical discomfort and a more patient-friendly approach, whilst venturing into somewhat uncharted territory is of course going to be accompanied by questions, uncertainties and doubts.
I remain hopeful about the potential benefits of this new testing method while also being mindful of its limitations for my own high grade diagnosis. The negotiation between embracing new advancements and managing the inherent uncertainties they bring is a reminder of the resilience needed to face these challenges and the importance of support, both medical and emotional.
The introduction of urinary biomarker tests offers us a gentler peek into our health. Their ease and patient-centred approach bring a breath of fresh air, yet we need to remember that, at the moment, they enhance rather than replace cystoscopies. Cystoscopies’ up-close inspection of our bladder’s interior helps give us a full picture of our body. Combining the new with the tried-and-true gives us a comprehensive set of tools for keeping an eye on our bodies and our cancer.
Final Thoughts
Overall, my experience with the urinary biomarker test was very good. It represents a step forward in bladder cancer management – one that respects patient comfort without compromising on care quality. Each patient’s experience and choice will be unique, but I am grateful to have had this option.
For others in a similar position, I recommend discussing the possibility of urinary biomarker testing with your medical team.
Whilst understanding that this new method would still need to complement the traditional approaches, the decision to explore urinary biomarker testing underscored the importance of staying informed, being proactive in my healthcare decisions, and continuously seeking options to improve my quality of life.
Remember, we’re all in this together, navigating our journeys with the best tools available.
Disclaimer
While sharing my personal experience with the urinary biomarker test, it’s important to note that Cambridge Clinical Laboratories provided the test free of charge. However, I want to emphasise that the thoughts, experiences, and opinions expressed in this blog post are solely my own. They do not, in any way, represent the official stance or opinions of Fight Bladder Cancer.
My story is based on my individual journey and perceptions. This account is meant to offer a personal perspective and should be considered as such. The provision of the test at no cost did not influence my views or my decision to share my experience. I aim to offer insight into my personal journey, hoping it might be helpful or informative for others in similar situations.
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