Feeling lost.

Hello Ivan263 and welcome to this friendly group. We know how scary and confusing the early days can be especially when the doctors throw all this information at you in one go. A follow up TURBT is standard and as you say to mop up, take sample biopsies which gives them a more accurate diagnosis. You may also be called for a CT scan.  A surgeon will always mention bladder removal. Many here have been treated successfully with BCG or other treatments. As bc is known to recurr, other people have taken the choice of bladder removal. It is early days for you and the advice we give is to take it one step at a time. A month is not a long time in this world. Lots of varying experience here, so always someone with an answer. Best wishes.

Hi Ivan263 and welcome to this friendly knowledgeable group as I gather you're new? I do wish surgical team wouldn't do this giving a prognosis only the lab can truly provide. I'm sure their intentions are good as some people drive themselves mad with worry while waiting for the lab result, but it doesn't help anyone like you.

I hope it may be of help to consider my husband's saga. True his was PTa rather than 1 like you, but also G3. And he didn't have a single tumour but a complete bladder-full. These docs who do bladder removal do like to do their stuff. But when offered this also in his early 70s five years ago, my husband was utterly shocked and very resistant to the highly probable end to standard style sex life involved for men. He had 6 BCG.

At that time not having found this forum, we didn't know that BCG and recurrences can be like putting weedkiller on a path: every now and then, another weed pops up and you just have to apply some more. So when the flexi after the 6 BCG, done under gen. anaesthetic because of his strictures, turned into an instant second TURBT to remove a single immediate recurrence, they offered him a choice. "3 equal options, more BCG, bladder removal, or Mitomycin." I make a point of telling his story to folk in your position as for unknown reasons many centres apparently do not mention Mitomycin [delivered into bladder just as the BCG is] as an option. Anyway not knowing that recurrences don't mean BCG has 'failed', just that you need some more, he went for the Mitomycin. That was 5 clear years ago and he still has all working parts ! 

Best wishes, 

Denby

Hi Ivan263, I have had exactly the same dilemma as you, first Turbt, grade 3 PT1 and second Turbt reoccurance grade 3 PTa. I was told best possible outcome to have bladder removal or I could try BCG/mitomycin mixture at Guys and I really felt scarred and still do about making the choice. I had to go with my heart and try the 9 weeks of treatment and hope to god that it works, otherwise it will be bladder removal which I really do not want but may have no choice. There are people on here it has worked for, so some are lucky and some have had recurrences and others have decided to go for the operation straight away. It's so difficult. People on here are very encouraging and helpful when all this is new to you. I was only diagnosed in July. 

Hi Denby.. yes new!! Thankyou for that - I will keep that knowledge in my cupboard. The post histology consultation was just a blur and will have  to receive letter from him due to the postal strike! I am just trying to build my knowledge and stay away from Dr Google.. and keep telling my self at least I found it, it’s out and there is progress.. Did your hubby continue with Mitomycin for a period of time? 

Thankyou rilly- it is good to hear some positivity.. it certainly puts life in perspective .. 

Hi Ivan, I had exactly same desision to make when diagnosed in July, had second Turbt Sept and after giving it long and hard thought and asking advice on here I opted to try the treatment, I know it's a risk but did not feel ready for the major op just yet and felt I needed to give it a go. I am 5 treatments down and although nervous about outcome feeling OK. Everyone on here are very helpful and encouraging and it gives lots of hope. It is very difficult. I was also grade 3 PT1. 

Sorry did not realise first message sent. 

Thankyou bumblebee49.. again not wishing to raise my false hopes but is it common for the staging to be reduced to ta on a further mop up turbt- I had expected any change would be negative. Thankyou so much for your comments 

Hiya, I really don't know, I was hoping they would not have found anything the second time and I am not knowledgeable enough to answer that question. Hopefully someone may know. I am afraid I am being a bit head in the sand at the moment, I have tried to read so many things about it all, I gave up and I am just getting through the treatment at the moment and trying to stay positive positive positive

Hi Ivan263,Welcome to the group.I hope you will find it helpful and supportive.Best wishes Jane