Feeling lost.

I think it was 6 initially, then he was supposed to have had another single as a 'wash-out' after a cystoscopy but they had failed to get the internal prescription done to the hosp pharmacy so failed. Then they apologised for that and had him in for 3 x once a week 'to be on the safe side'. 

Thankyou.. already I feel a tad more comfortable with my journey because of this group.. 

Thankyou winkers60.. it has been most helpful and to know others in or have been in the same boat gives understanding .. 

So glad Ivan263, I have found it immensely supportive. Especially during lockdowns when normal company was suspended. Have you been reading the 'How are we all?' thread? feel free to chip in with whatever, a place the excellent rily started for being oneself not only a cancer person/loved one.

Hi, my husband was diagnosed Jan 2018 with muscle invasive G2 plus CIS. The option put forward by the surgeon was removal. He wasn't ready for that and went for chemo/radiation. The CIS reocurred Jan 2021,treated with 11BCG. Yesterday he was given an all clear.

This way forward has worked for him so far, although it was difficult to go against the surgeon's recommendation. Our Macmillan nurse has been brilliant throughout. I'm sure you will find a pathway that works for you, it's still early days. 

Hi Ivan, I was put in a similar position - I had assumed my small tumour was low grade like my brother's, just a nuisance that needed removing & was likely to crop up again. To hear that it was G3 & might need bladder removal was shocking. The second look is gold standard to make sure they have the stage correct ie no muscle involvement. Highly unlikely for tumour to grow that quickly, but they might find cells that they missed first time. 

This is a very difficult decision to make & you have to weigh up pros & cons, personal circumstances etc. No-one can tell you your personal risk. Some people will have BCG & be cured, or at least defer the need for more aggressive treatment. Some will have a tumour appear despite the BCG, but still be able to have surgery (possibly with chemo too, or chemo/radiotherapy) & still be cured. Some will be unlucky & have a recurrence that is so aggressive it becomes incurable. 

For various reasons I chose immediate surgery, but I quite appreciate that is not for everyone. But I think it is important that you do appreciate the gamble you take with BCG. Take your time & you will find the choice that is right for you. Best wishes.

Hi Ivan, 

23 months ago I was diagnosed with Bladder cancer when they found I had a 3cm tumour when I had a flexible cystoscopy.  I had the tumour 4cm  removed under general anaesthetic 4 weeks later followed by a six week course of Mytomycin.  On completion of the course of chemotherapy I  had another flexible cystoscopy where they found a small ammont of cancer cells in the original site of the tumour which they removed followed by a further 6 weeks course of chemotherapy Mytomycin.  Had a follow up 3 months later and it was clear followed up again 3 months later still clear.  Had another check up 3 weeks ago which was clear and told they don't want to see me again for a year.  Great news.  

I know it may be difficult but stay positive and carry on doing the things you normally do, don't  put life on hold.

All the best and don't be afraid to ask for reassurance.

I was pleased to read this, It's always hopeful. 

Again good to read, giving hope. 

Glad to hear my slightly wordy story of my trip through the past two years has given you a bit of comfort.  Let the forum know how you get on

Kind regards RN Stoker