Bladder cancer diagnosis 1 year in

Hi Miss69 and welcome to our friendly  and supportive group. 

I was diagnosed in February this year with High Grade aggressive tumours G3 pT1 and I'm on BCG therapy. I finished my 6 week induction of BCG in July and then had a cystoscopy where red patches were seen so I've got a surgery on 21st August to take some biopsies and resect the red areas, so at this moment in time I don't know if this is a recurrence or not.

What Grade of Bladder Cancer was your diagnosis? Do your clinicians seem worried about your recurrences?

I'm sure others will be along soon to offer their insights. 

Keep posting and stay positive ️ 

Sending you love and hugs, Ade xx

Thank you for replying. I was diagnosed with Non muscle invasive bladder cancer, after I had symptoms of diabetes. My care team don’t seem overly worried that I can tell. But on my initial diagnosis I had 1 tumour but 6 months later 9. Since then anything from 1 to 3 tumours have grown back within a 3 month period. I would just like to hear if anyone else has had this many tumours return. I hope that your ok, and have friends and family supporting you as it is hard x 

Hi Miss69,

My family and friends are brilliant. I couldn't ask for better support but it is hard. I find it mentally exhausting.

Are your tumours low grade, superficial? It seems like they only monitor until the Grade of the tumours change.

Love Ade x

Sorry Ade, Superficial low,grade.  And I agree with you when you say it’s mentally exhausting. I don’t sleep well now but work 12 hour shifts so I’m always tired. I just can’t express how I really feel about it all. I’m a little younger than you ( just turned 55 on the 29th July ( Cystoscopy that day too ) but I really hope you get some good news about the Red patches. I did have a Red patch too that they were worried about, but it turned out to be a reaction to the BCG treatment where a tumour was lasered off 6 weeks earlier. Thank you again for replying. Miss69

Happy Birthday for 29th July, what a way to spend your Birthday Keep posting on the forum. Everyone is very supportive ️ 

Thanks for your good wishes. Let's hope it is the end of your recurrences .

Love Ade xx 

All the best to you too, I really hope you get some positive news soon. Lovely talking to you here. Miss69 x 

Hi Miss69 unfortunately it's quite common for recurrence over that period and the main thing is that it is superficial and not aggressive. If it can be managed just with burning it off and the occasional TURBT they often try to do it that way and  many people often become clear over a period of time. Your body can fight it too this way.

The way I would look at is that they are monitoring you all the time and obviously have a plan which over time could mean the end of it rather than the radical cystectomy or BCG etc.

There have been many people on this forum in similar situation and it has worked . However there are also occasions where it doesn't and then further steps are needed. I wish you all the best and hopefully next one will be better news.

Thank you Lugsy. x 

Hi Miss69, my OH had 'lots of seaweed like growths' removed under GA [general anaesthetic] many many years ago, no mention of cancer, no follow up. Only when we moved house and getting up in the night got too much, did the new GP send him for cystoscopy which showed his whole bladder to be 'like inside out cauliflower' covered in innumerable papillomas. But these were G3 Pta, so 'high risk' but non muscle invasive. 6 BCG, a single recurrence taken off six weeks later, some Mitomycin and he has been clear for over five years. 

So yes, it appears he did have loads of tumours return.

My cancer nurse at the hospital said it wasn’t uncommon for more tumours to occur after mitomysin treatment, I just wasn’t expecting so many on each 3 monthly  checkup. I’m glad to hear your Partner is ok now. Hopefully I’ll have a clear cystoscopy in 3 months time. Thank you for replying to my post. Miss69 x