Not just a smoker’s or a man’s disease.

I was only about 40 when I started to experience haematuria and severe pain when urinating. My GP prescribed course after course of antibiotics, none of which made any difference and when I pointed out the fact that my urine tests consistently identified blood she explained it away by the fact that I either had my period or it was the consequence of lacerations on my genital area from frequent thrush infections. When I persistently asked about the pain and my concerns that I could have bladder cancer she dismissed them saying that bladder cancer never involved pain.

I eventually went to another GP who immediately referred me to a urologist who ordered an U/S – that revealed several malignant polyps that were immediately removed via TUR. After that, I has the usual schedule of checkups – initially 3-monthly, then 6-monthly. These involved cytology plus cystoscopic examination. After about 12m the pain upon urination returned but the checkups revealed no cause for concern.

In November 1999, my usual checkup was clear but the pain persisted and the following month, a small amount of blood was again visible in my urine. I couldn’t see my usual GP unfortunately given that it was the Christmas holiday period but the GP I saw ordered an urgent cytology test which revealed an agressive cancer. My fabulous urologist saw me immediately, identified significant CIC and performed a TUR that afternoon given the aggressive nature of the tumours.

After 4 weeks I underwent 6 weeks of BCG treatment with a follow-up of 3 weeks 6 months later even though there was no evidence of cancer upon examination. The absence of any cancer cells to attack in my second course of BCG meant that I was quite unwell as a consequence but my urologist felt we should err on the side of caution as the CIC had been a high grade one.

That first course of BCG was now 16 years ago and I have remained cancer-free but have annual cytology tests still. I only ever smoked for about 4 months of my life in my late teens and was a relatively young female so not in any specific risk category. I had worked in environments where I was exposed to a lot of passive smoking and had grown up in a household where my father smoked quite heavily. My urologist thought that was the most likely explanation given the absence of any family history – a veterinarian friend thinks that the fact that as a child who grew up in the country who used to spend a lot of time playing in bracken fern and occasionally even chewing on young fern shoots, that the consumption of bracken might have been a factor – it causes bladder cancer in horses and cattle. Who knows? But the moral of the story is that while blood is the most common initial symptom, pain should not be ignored nor should your age or your gender or your smoking status. I found it a very difficult time – I was not able to attend any support groups as the only ones available were for prostate or breast cancer at the time and there was little information available.

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