TURBT No.2……

Hi Julia and sorry to hear they couldn't even find you a bed. Just to maybe reassure a little, my OH had 'multiple seaweed like growths' removed many years ago with no mention of cancer. With work and kids we never gave it further thought until after retiring and moving, the up-in-the-night got too annoying.

Long short, whole bladder was full of tumours. Five years on, lots of clear six-monthly checks.

The questions to which you need answers after the meeting are. imho, is it muscle invasive or not? and what stage and grade. Don't necessarily panic even if it is G3 ['high risk of recurrence'] as this is still most treatable -my husband's was G3. Expect to be sent for a CT scan to check the rest of you is OK, again don't overthink just because you get scanned, it is routine.

best, Denby 

Hello Julia, sorry to hear of your not so good experience at hospital. I had 3 TURBTs in all and was deemed initially to have had multiple superficial tumours pt1 grade 2-3 which all sounded quite alarming. At first I had to try to get my head round the acronyms and strange language which a new patient struggles with. I opted for BCG immunotherapy but there are of course other options. Please do not worry, just take each stage of treatment as it comes, once you get a path it will become far easier. 

Stay with this forum, there are more than enough people with different experiences and have their own stories to tell. Also leave Dr Google alone, it can be quite misleading, we are a friendly group of people, it's not all serious and there is some friendly banter to be had too.

Take care, Chris 

Hi Denby, thanks for your reply.

I wasn’t impressed being moved into a corridor at 1.00am I can assure you.

my first TURBT removed a 4cm, G2PTA tumour from my bladder end of July, and I was told it was non invasive. I’ve had 2 CT Scans, (all before 1st op), 2nd one was Thorax, and was told I had no spread. I thought this 2nd op was to just sweep anything that was left behind from 1st one, so was surprised to be told about my multiple recurrence and in different places in the bladder, not original tumour zone.

again I’m not sure what I’m asking for here, but sometimes it needs to be put out in the air rather than in my head when the lights go out.

thanks again for your info….it all helps.

Julia 

Thanks Chris, I’ve definitely unfriended Google a while back !!!! No help to no-one, not for this sort of thing.

it’s nice to know that these things are…..can I say, Normal.!
I’ve been trying to take each stage as it’s come at me, but I’m nosy and I want to know everything as soon as the Doctors do, but that’s just my control thing and need to know my options.

thanks for your info and interest, I will try to slow myself down, and breathe 

Julia

Hi. After 1st TURBT, did they put something in your bladder like Mitomycin C? If not it is possible that these new ones were seeded from cells left in the bladder after the first TURBT .. and they could float to anywhere in the bladder to reseed.  This is what I think happened to me. TURBT 1, three tumours G3pT1 . After TURBT 2 they found two further tumours G3pTA .. You won't know until they get the results back from pathology, have their MDT meeting and call you in for an outpatient appointment to discuss the findings.

Hi Julia,Welcome to this friendly group.I hope you don’t have to wait too long to hear about the next step.Love and best wishes Jane 

 Hi again Julia. Just to echo what others have said. Take things one step at a time. It is always anxious waiting for appointments but when you get your latest results you will know the next step and we will be able to help you with going forward. As regards the CT scans coming first, Do not read anything in to this. Different departments do not talk to each other and send out appointments independently. I hope all goes well. Best wishes.