after 18 months of trying to convince GP my symptoms were urinary and not gynae, I eventually got a urology referral, cystoscopy showed 2 tumours, was told by consultant he was confident were just papillary and I would just need TURBT and 3 monthly follow up. After surgery, 2 weeks ago I was told only one tumour was visualised and removed. I asked how that could be but wasn't given any reason other than it may have fallen off the bladder wall! and told that I'd get cystoscopy in 3 months. However, nurse asked someone to contact me as I was concerned that they had left one in bladder and was feeling upset by such a vague and unlikely reason.
Consultant rang me at home on Wednesday evening, (9days after surgery)saying he had maybe got it wrong and there was only one(I'd seen 2 on screen) although he didn't think so. Again I expressed concern, he then asked if I'd had my histology result, which I hadn't.
he proceeded to open up his email and read aloud the histology report as written to him. I was informed over the phone in this manner without any prior warning, support or opportunity to ask questions and told that I had in fact a high grade TI tumour which which was well established in the submucosa, he found it surprising as he really thought it was a superficial ta growth. He said he was sorry and I'd need Immunotherapy and would be in touch. I was in shock and still haven't quite taken it in, I'm scared, uninformed and have no idea when I will hear from anyone and worried they have left the second one in bladder... I'm hoping to get some support from this site and hope as the only info I've got to date is what I can find on google, statistics are very frightening and I'm worried covid and need to self isolate etc... will delay further surgery.
Hello Clam and welcome to the community, although sorry to hear the confusion over your diagnosis. T1 bladder cancer is very early stage and so time is on your side at the moment. It is not unusual for them not to get everything out first time and many of us need to go for a follow up TURBT. If your doctor thinks the next step is immunotherapy, then it will probably be BCG treatment. This is a treatment where BCG is administered directly in to the bladder, usually in 6 initial treatments. Treatment doesn't start until about 6 weeks after your TURBT in order to let the bladder heal. Rather than going in to more details here, could I suggest you come and join us in the Bladder Group where you will get the wisdom of many others who have been through this. Click the link to get to the group and introduce yourself there. It may be an idea to copy and paste your above post in the group. Bladder cancer can be treated successfully and there are many of us in the group to tell the tale. Best wishes.
