David's story

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In my case I was first diagnosed with bladder cancer in April 2001.  Because I was an industrial chemist this disease was always a risk factor and I was screened regularly by my employer and in the December of 1999 had a suspicious urine cytology.  A decision was made to repeat the test at 4 weekly intervals and all these showed clear as did further tests at 6 and 12 months.  Then in the March (9 months after I had retired age 56) I passed blood and didn't need a doctor's visit to know what it meant.

The surgeon conducted a TURBT on a single tumour which was superficial (Ta/G2) and thereafter commenced regular cystoscopies.  On the first occasion I had no other treatment.  I went for two years before the next occurrence, also superficial.  Now I won't bore you with all the following details but suffice it to say between 2003 and 2010 this was almost an annual event and the surgeon also gave me mytomicin B, both immediately after surgery and also as a post-surgical course, once.  I did not react well to mytomicin and it clearly was not that effective either.  Although I did not immediately know it things were changing at a cystoscopy in September 2010.  During surgery my obturator nerve spasmed and my bladder was partially perforated.  I was assured this was not that unusual and no big deal but I had a recurrence the following January and again in September of 2011 and was now thinking something more needs doing as this kind of frequency was no longer funny.

However, it turned out after yet another TURBT (this was number 9) that one of the areas was not Ta and was invasive and an MRI showed it in inguinal lymph nodes as well, which came as a surprise to my surgeon and a shock to me and my wife.  So after a course of chemotherapy (cisplatin and gemcitabine) over 9 weeks, to which there was a response, in February 2012 I had a radical cystoprostatectomy with extensive lymphectomies (28 nodes) and construction of an ilial loop diversion.  I was given various prognoses regarding the likelihood this was a cure from 10% to 35% by different doctors and in truth was disappointed that this, now necessary surgery, had not been instigated before it was now, essentially, closing the gate after the horse.  The burning question would be had I been offered it earlier would I have taken it.  On this occasion my surgeon was going to go with BCG, thinking the tumours were still likely Ta, but I had decided to ask for the cystectomy rather than look down the possibility of TURBT surgery every 6 months, but I had that anyway.

My situation now, 2 years after surgery, both in good health, is that I have just completed a 20 treatment course of radiotherapy on a metastatic pelvic lymph node and have been told this could be a 30% chance of a cure.  There is only one node and it seems it has been slow growing, which is not typical, so fingers crossed.

So, what are my conclusions.  Firstly having a urostomy is no big deal and if I had had it done in 2010 my chances of a cure would have been as close to 100% as makes no difference.  Having said that, the doctors who have been involved in my care have been absolutely terrific and I would not dream of changing them if I was starting over again.  I realise they make decisions based on what is not only in front of them but also on statistics and much greater knowledge of benefits and consequences of those decisions.  But, clearly right now I would not bet against bladder cancer having the final say, although I remain more optimistic than that might sound, and my advice to my brother, son or anybody else who might see a set of circumstances that happened to me would be; if you are having multiple recurrences of superficial bladder cancer get your bladder out before it becomes invasive.  Patients who present initially with invasive disease generally do better than those, like me, who cross from superficial to invasive.  In the early days have a go with BCG if that is offered because if that doesn't work or side effects are intolerable you can still go for radical surgery.

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