Final Diagnosis and Treatment Choices....

Thanks Denby - our thought processes broadly meet what you are saying here and it's great that your husband has had 5 years recurrence free.   I do feel the same as him, and was fully expecting cystectomy to be my only option.

My consultant was clear that both are 'reasonable' options, I could also choose 2 years of BCG but I'd prefer to have the chance to be entered for the trial.

Thank you so much for sharing, one of our considerations is 'what if it recurs really quickly?'  Especially as it is G3, so to have some real life context around that is helpful.

So many things to consider.  I've had no symptoms (still don't) and this was found by chance after an ultrasound for something else, I'm only just 50 and otherwise fit and healthy.  I've just had an exciting promotion at work which means I'll be able to travel to the US.  Our children are 19 and 16 so starting to become more independent.

We are carefully considering elements of risk with each option - there is risk with everything. I do think that at some point I will likely have to have a cystectomy, and choosing not to do that now increases the risk, but we have to weigh up what that is and how much will it be offset by surveillance?

I've also seen a cancer journey through to the bitter end, we lost our Mum back in 2007 to lung cancer, that was terminal once it was finally diagnosed - so that helps with perspective in my case - for now , although it's aggressive, it's contained and we have options, so we feel positive that we can manage it.

We'll continue to map this on our big sheet of paper!  All the input is gratefully received.

Hi catlady101

It’s a very personal decision of course, but it looks like you are considering every perspective. I had a different cancer and turned down a randomised trial when my cancer was first diagnosed because I wanted to get on with the standard treatment as quickly as possible, and I remember my consultant saying you have to be quite altruistic to choose a trial. I didn’t want to risk NOT being on the arm of the trial which had the full treatment offered. As it happened, my cancer recurred within 9 months, was then very aggressive,  and resulted in massive surgery including losing my bladder, but I don’t look back with any regret about not being on the particular trial I was offered as I know ladies who chose the trial and still had recurrence, without the option of the surgery I had. They are now on palliative chemo but no cure possible.

So long as you are comfortable with what you end up doing, that’s the main thing, and I wish you all the best in whatever you decide.

Sarah xx

My situation seems very similar to yours, diagnosed with G3 Pt1 in August after first Turbt in July, recent second Turbt and will get results tomorrow and see what choices I am offered. I am 62 and otherwise healthy, no previous problems. Its all a risk I supposes the decisions we make, I suppose unless you go for removal, which I really don't want to do but they may say that's the option they recommend. 

Hi I've replied on your post - I'm same, no other symptoms and fully fit and healthy.  It feels like its happening to someone else!  I went to a 50th birthday party on Saturday and friends that I haven't seen for a few months were looking at me agape - one even said, but you've got cancer!  

I've got my first clinic on Thursday, expecting to start treatment in 2-3 weeks.  Whichever arm I'm on, I'll be getting a minimum of BCG and I know that the surveillance will be really rigorous, that's what tipped me to the treatmeant.

Hi catlady101, I think I am going to give the bcg/mitomycin a go, I just do not feel ready for bladder removal yet, if it comes to it so be it but I feel so well and want to give my body a chance to fight it with the chemicals first. Let's pray we both do well with our choices. 

Good luck - I hear you!  !  I start mine next week.  I've been randomised to the BCG arm.  6 times weekly and then once every 4 weeks until September.  I'm fully expecting something to put a spanner in the works, but giving it a go and seizing the day.  

Hi catlady101,Best wishes for your treatment.I hope it goes smoothly.Love Jane x

I know I hope I am making the right decision, I will keep in touch with you, might private message if I can remember how to do it.