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

Hi Lennille, I had at least 4 reoccurrences ( and TURBTs) during my BCG treatment (27 doses!) But after the full course and almost 4 years of treatment and 3 monthly cystoscopies, finally I had a whole year clear. Then another year, and another and another. Hoping next October will mark 5 years all clear. Denby's BCG weed killer analogy was definitely accurate for me. We never know if there will be another reoccurrence but I've learned to celebrate one day at a time and try not to let anxiety destroy my life. Sending best wishes to your husband for his next treatments. Love Hx 

Thank you so much - it has really got my husband down and I’m really trying to stay as upbeat as possible. Let’s see what his upcoming TURBT brings

Hi Lennillie,

My mother a heavy smoker had bladder cancer 51 years ago. She ignored it and it spread and killed her. I stopped smoking then.

3 years ago I was diagnosed with the same thing. It was muscle-invasive so I had chemo, removal of bladder, a stoma and later 3 months of  immunotherapy. So far I'm fine, aged 72 active and exercising properly, just over 2 years after the operation. I was glad to have the bladder removed and find the stoma and bags very manageable. I know some find it daunting but not me (nor many others on this forum).

As far as genes are concerned the medics say its unlikely. However I am not so sure as eg mum had osteoporosis and so do I (recognised as happening a lot) so why not the cancer?

 Last year I attended a Zoom re bladder cancer run by researchers at Birmingham University and learnt they are researching blood tests to diagnose the disease rather than needing a Cystoscopy and TURBT so cheaper. (Now available privately they said).

Naturally I asked about a test of likelihood of genetic  transmission. They had not heard of such a thing - and are plugged into other researchers around the world - nor done anything on researching such a screening test yet but I pointed out that patients like me would want their kids to be able to have such tests, which interested them.

Maybe others are further along this line, I hope so. There seem to be many teams looking at bladder cancer these days.

All the best,

Latestart

Hi Latestart, my late-husband and I (obviously not genetically related) both got bladder cancer from our common smoking habit. In those old days we didn't realise the dangers of smoking around our children, of course that now seems idiotic, anyway it might be that your mum's smoking habit also affected you by polluting the home. Well done for quitting so speedily. It took me till I was 64 to free myself from the devil "nicotine". 6 years later I discovered my BC and thanks to NHS I live to tell the tale. Hx 

Well done in stopping in the end. Watching Mum die (aged only 63) convinced me to stop. I did smoke Consulates for 5 years, up to 20 a day and I thought stopping it meant I wouldn't also get it.

• After I did, I worked out that I may have got it from passive smoking - as you say, smoking was very common and in those days no one knew the dangers. 

I endorse everything you say about the NHS as well.

All the best,

Latestart