Tumour Recurrence - 2nd TURBT - Clinical Trials - Genomic testing

Hi Lennillie and welcome to the group although sorry to hear your husband has a recurrence. Unfortunately we know this is not uncommon with BC. Results of the second TURBT will dictate the way forward. In cases where BCG has not been successful, they may come up with an alternative treatment. We do not hear of genetic testing very often in this group, but hopefully someone may have some experience of it. Best wishes.

I can understand that you feel anxious, with a recurrence already. Unfortunately BCG only works in a percentage of cases. As Rily says, the results of the next TURBT will be relevant to determine which treatment is now most appropriate. This may be more radical, to prevent further recurrence and spread - there may be options to consider. Certainly worth asking your consultant if there any relevant trials, but bear in mind that even if he is accepted on a trial, your husband would not necessarily have the treatment being tested.

Given that both my brother & I had BC, I asked my consultant about the possibility of inheritance. I was advised that this is rare, that apart from factors such as smoking, or exposure to specific toxins, the most common cause is simply age. My thinking is that maybe my brother & I have a genetic nature that made us susceptible to some toxin we encountered in our youth. I don't think there is a known gene they can test for.  Best wishes.

Thank you Rily

Thank you Teasdwill 

Hi Lennillie, my OH had many years back what I'd now recognise as a TURBT, but cancer wasn't even mentioned. The consultant explained away the bloody contents of the catheter bag and considerable pain on discharging him as 'there were more ["seaweeds like growths"] than we thought.

Years on after moving house, the getting-up-in-the-night got annoying enough for him to see the new GP. After a delay caused by referral to a private hospital on the NHS, a cystoscopy revealed his entire bladder looking as he said having seen it on screen, 'like inside out cauliflower'. IE, far too many to even count. A TURBT later and 6 BCG, six weeks wait as usual to allow inflammation to subside, another cystoscopy fortunately in a way under general anaesthetic due to his urethral strictures. Woke up to be told it had turned into a TURBT again as there was already a new papilloma. I don't know the size, but I can tell you that the diagnosis was G3 PTa. So, yes aggressive. He was offered more BCG, Mitomycin or radical cystectomy.

He [and I] did not want an RC if at all avoidable. Not understanding then that BCG is for many people, like weed-killer on a path, you just keep repeating it as fresh growths pop up, he opted for the Mitomycin. That was in around 2017, and the most trouble he has had since is the 'dreaded [because they can mimic cancer] red patches' but not cancer ones, and an area of thickened lining which had to be biopsied - but again not cancer.

I hope his history will give you some useful perspective. 

Best, 

Denby