Mums diagnosis

I had one very small tumour removed by water irrigation at my previous cystoscopy check up earlier in the year, I've also not long had another check up under GA and had several tumours removed, several small and one large. 

As to how small and large I'm waiting for my follow up on the 25th of this month to find out all the histology and what all that means for me and things going forward from there. 

So I had everything fine pretty much until Jan with the one small recurrence and now I've had several recurrences in just 6 months or so. What I should make of that I have zero idea tbh.

I also couldn't handle the Flexi cystoscopy under local hence having GA and Rigid cystoscopy, but having to be intubated this time it looks like GA will likely be no more going forwards so goodness only knows how I can move forward now, but hey its all good fun  Honest.

I might start calling them rumours rather than tumours seeing as autocorrect likes to change it to rumour frequently for me

Oh and pain wise this time nothing really other than discomfort and bleeding obviously the usual, I guess it does depend a lot on how much they have to cut away and how deep and the stent really did not help matters at all and made things worse. But as I said some people are fine with stents others like me hell no. 

It really seems to be a lottery as to people's experiences even with very similar stories.

Hi everyone 

thought I’d do another update. 
we saw Mums consultant today. They said her cancer is superficial which means it’s non muscle invasive , which is good news. . The thing that has concerned me is he said it’s grade 3 . Which means it has the ability to spread and to be aggressive . 
my mum will start immunotherapy (BCG) in about 2 weeks time which she will have for 1 year with breaks along the way. 
The consultant said that her particular cancer has 30-40% chance of reoccurrence . He also said that the treatment works on some people but doesn’t on others . 

I have mixed feelings , pleased that it hasn’t spread or invaded the muscle wall but I’m terrified  about the grading and the possibility of the immunotherapy not working . 

as always any one who has any experience with a similar outcome I’d love to hear from you 

xx

Hi,

Quite a few of us on here going through BCG treatment. Myself included.

My diagnosis is G3p TA and had my tumor removed in December 2022.

I've had 18 BCG instillations since and (not had wanting to tempt fate) not had a reoccurrence...

I'm scheduled to have 27 instillations in total which will finish next year all being well. But this depends on the Hospital Trust I believe.

The BCG hasn't been too bad, until the last batch which caused inflammation. 

The initial batch is called the induction and consists of 6 instillations. One a week for 6 weeks. Then 3 months break before having the maintenance course which will be 3 instillations (once a week for three weeks).

And so on.

Usually your mum will have a biopsy or a Flexi cyscopy in-between the treatment's.

Wishing you and your mum all the best.

Trevor 

Hi Anonymous,

Some people obsess about gradings I don't. They are just there for the medics to work out how to treat us best. The main thing to remember is that this cancer does recur sometimes but the treatments are effective. And lots of people never have a recurrence. 

Mine was muscle-invasive so I had the chemo then bladder removal and stoma op. Later had some immunotherapy. I try to get on with life and not think too much about what ifs. I could get run over by a bus too but I still take them all the time.

My tip is to focus on what needs to be done now and let the future take care of itself.

It's working for me.

All the best,

Latestart

(aged 70 when I had the operation, 72 now)

Very understandable that you are concerned about the 'what ifs'. The consultant has quite rightly explained the situation, but this often raises more questions than it does reassure. No-one can say who will do well with BCG & who not, but hang on to the fact that even if the cancer does recur, there are more treatment options and still a very good chance of cure. best wishes to you all.

Hi,It’s good that your mum’s cancer is non invasive.G3 is common in bladder cancer but try to think that non invasive occurs more often than muscle invasive.If it does come back then it can be dealt with.Best wishes Jane x