AWAITING 2ND TURBT RESULTS & CHEMOTHERAPY TRIAL

Hi Em444. This is a familiar story. Once the initial TURBT is done, things tend to drag out with less urgency. The waiting and lack of information is annoying but good to know there is a firm date to discuss things. 2-4 weeks used to be the norm but there is still a bit of a backlog following covid and we have seen several people waiting up to 8 weeks.  Best wishes. 

Hi EM444, please, please, try to take a deep breath or 10, and encourage your partner to do likewise.

My husband had a load of ""seaweed like growths" removed at our local hospital years ago, so long we can't even recall the year. They didn't call it cancer, it never occurred to us to do so, and there was no follow up.

Only after we moved house long distance and the getting-up-at-night got too annoying again, did the new GP send him to urology. There was a mess up with 'choose and book' causing further delay. He then saw his whole bladder was " like inside out cauliflower". It was staged and graded as PTa G3. This is described as 'aggressive' but it was not muscle invasive. He had 6 BCG, another check at 6 weeks later [they always wait to allow inflammation caused by the treatment to subside] -this turned into another TURBT as there was already a new tumour. He then chose Mitomycin treatment from the "equal" options offered. He has been clear for about 5 years since all this.

There are many similar histories on here. So you see the nurse although it may sadly have come across as callous to you, was only being quite reasonable.

Hope this helps, Denby

Sometimes the medics, who are dealing with this all the time, forget how worried the individual feels. What is really important to establish now, is the stage, as this will determine the most appropriate treatment. High grade is serious, in that it needs treatment to halt it recurring/progressing, but it is then the stage that indicates the possibility of cure & informs prospects.

As patients, we do tend to think the worst & want to get on with treatment ASAP. Often, it is not as urgent as we think. I had a high grade tumour (11 years ago) which had been in situ at least 3 moths before being detected.  I know the waiting is very stressful, but try to find a distraction to fill in the time. Hopefully the consultation will give a clearer picture of the way ahead. Best wishes.