Never ignore blood in your urine: Julia’s experience

Julia MacLeod’s story

This year for bladder cancer awareness month, we are urging people to speak up about their symptoms to try and remove the embarrassment people may experience. Often these feelings mean people delay getting their symptoms checked, which may in turn prevent an early diagnosis.

To help with raising awareness, Julia MacLeod shares the symptoms which led to her bladder cancer diagnosis. Julia explains she had “no awareness of what blood in the urine could mean” before being diagnosed.

“It was late August 2017, and I was in the middle of two weeks’ annual leave from my demanding, stressful, but overall enjoyable job – I was also going through a redundancy process.

I went to the loo on a Friday evening and my wee was bloody – very bloody – I smelt it before I saw it! This happened three times during the evening and not again. No other symptoms.

I decided I must have some sort of infection and on Saturday went to the pharmacy and bought an OTC treatment for cystitis which I took over the weekend – with no further symptoms.

On Monday morning – I was beginning my second week of leave, I called my GP surgery, I still don’t know why really, as I was fine. The system is that you call, explain the symptoms and a GP calls you back.

At this point – I have to say, that if I had not been on leave – I may well have ignored the symptoms and continued with the demands of my day-to-day life and my work.

One of the GPs called me back and asked a few questions – she told me to bring in a urine sample, collect a script for antibiotics and call back on Thursday afternoon for the results but, as I had no other symptoms, if the test showed no infection, she would fast track me for bladder cancer investigation.

I was shocked, but later I was just so pleased that she was on the ball.

I was out walking on the Thursday morning when my GP called – “no sign of infection so I am fast track referring you for investigation”. She was reassuring but I started to get scared!

Within the week, I had blood tests and a cystoscopy where I was informed that I had bladder cancer (same cancer which my husband had died of in 2011 – what a shock!)

The consultant and team were kind and reassuring and I had a TURBT with Mitomycin washout within another two weeks.

After a year of surveillance, I was discharged, having been told I was no more at risk than anyone else in the population of developing it.

However, on New Years eve 2021 – 22, I again noticed tiny spots of blood on the paper after a trip to the loo.I contacted my GP once they opened after the bank holiday. As I wasn’t entirely sure where the blood had come from and given my previous history,  I was fast track referred to the Gynae and the Urology pathways.

I was fortunate to be able to have ultrasounds and cystoscopy on the same day. The surgeon immediately told me the cancer had recurred in my bladder and he was concerned.

I had a TURBT within two weeks and then further surgery a couple of days later.

The cancer was pta G3 – high grade –  and I went on to have 15 rounds of BCG and am now on regular 3/12 review.

Again, my GP practice didn’t hesitate and referred me immediately for investigation.

Julia says she had “no awareness of what the blood in urine could mean” before her diagnosis.

The fact it happened 3 times in one evening, but then didn’t repeat, means she could have easily ignored it as nothing.

It is important to note that Julia’s husband’s symptoms were very different – he had building pain which was investigated over various specialities and eventually when he was diagnosed, he was already terminally ill with a BC which took over his kidneys.

It is important to be aware of all bladder cancer symptoms. We have a useful list here: https://www.fightbladdercancer.co.uk/get-help/signs-and-symptoms.

If anything seems unusual in your body, it is always better to get it checked, just like Julia did. The earlier bladder cancer is caught, the easier it is to treat.