Were do I begin.

16 years 6 months ago #8301 by cathy
Replied by cathy on topic Were do I begin.
Thanks for that Pat, from this I can only assume that he is not stage3 / grade3. Well I hope he is not anyway, I am now thinking that grade 3/3 on the paper is meaning grade 3 out of 3, & stage stated connective tissue, not muscle.
I have asked Dad to ask for a copy of his path results & he said I dont know whether your allowed, I said my word you are they are your results, he is happy to go with the flow at this stage, (he's not one to make a fuss) So I doubt whether he will ask, I am sorry if I have misled anyone with the confussion, but believe me the goal posts just keep moving, so we are told one thing & take that as what is happening only to be told they are doing something else. It was only on Sat that he was told that they will operate in the next 2 weeks to make an opening between the prostate & the bladder for the bcg to work, now this morning (monday) he has had a phone call to say they will just go ahead with the bcg in the next couple of weeks & not do that op. ::) ::) ::)
I just hope that they do know what they are doing.
regards,
Cathy.

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16 years 6 months ago #8299 by Patricia
Replied by Patricia on topic Were do I begin.
Yes BCG is used all the time in the USA an UK but NOT for stage 3 grade 3 BC.
Pat

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16 years 6 months ago #8295 by cathy
Replied by cathy on topic Were do I begin.
This is the lastest, the uk dr has opened up the area were the urita goes into the bladder in the hope that the bcg goes into this area, Dad will go back into surgery in the next 2 weeks, they will some how put an opening/hole between the bladder & the prostate as cancer has also been found in this area, by opening it up they are hoping the bcg flushes into this area also, they will monitor him very closely & if it is not responding to the bcg they will go ahead with R/c.

To clarify a few things, yes only months ago they were talking about him losing his kidney as they said once the tumor is in the urita, it is safest to take the kidney to. They organised the bi-op and from this bi-op they said that it would be best to have r/c as path results were clear of muscle involvement, yet they were very suspect as they couldnt rule muscle involement out with urita.

Pat we are in Australia, this uk dr has come over here, with regards to medicare or public health every australian is entitled to medicare, you can still get the top dr's & top surgerns, but you get who you are given, its not like you are getting people that are unexperianced, they would be the same guys you would have if you have private health, the difference being if you have private you chose your specialist & he/she should see you through & of coarse the cost. The problem with getting who your given is that they may have different opinions & the uk dr stated that bcg is used all the time in the uk & the usa, Wendy thanks for the link, I havent read up on it as yet, I need to get my head around it all.

I would need to double check Dads, grade, on a piece of paper that the uro that was going with the r/c wrote: grade 3/3. Stage-connective tissue, not muscle.
( although she went on to say they couldnt rule out muscle involement.)
So I would have to check what these lastest path results say.
Sorry if it is all to confusing, but as you can imagine we are a bit confused too with what is happening. Thank you all for your input, & I too hope they know what they are doing.
regards,
Cathy

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16 years 6 months ago #8223 by Mike
Replied by Mike on topic Were do I begin.
Well first I would never go through 30 cystos and turbs to start with, and after all those turbs I would think one of these Dr's would see the cancer moving into the ureter. It's got to get to the kidney somehow and that would be my guess. My tumor was growing at the top of my bladder and also ended up blocking my left ureter and they saw that on the first turb. They put in a double-j stent and that did the trick and opened my ureter up and got my left kidney working again. Anyway this just sounds like before all this the bladder should of been removed and you said you signed the consent form I don't think I would of backed down on that I'm stubborn. But it sounds like you got an idiot thinking hey we can save this bladder and now what good is that. I can't believe your dad had to go through all this b4 he is finally getting his surgery I'm definitely at a lost here but good luck to you. Joe

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16 years 6 months ago #8222 by wendy
Replied by wendy on topic Were do I begin.

Dear Cathy,

There is no BCG given for stage 3 blc...stage 2 is already muscle invasive. Have you read the page about staging? blcwebcafe.org/staging.asp
BCG is given to stage Ta and T1 cancers, and CIS (carcinoma in situ, you can read up on this on the main site under 'superficial bladder cancer' in treatment options.

I think the doctor meant 'grade' III, not stage III. The question is, what is it, stage Ta or T1, and was there muscle in the specimen so that they could rule out muscle invasion. The risk of understaging is high with T1 tumors so he'd best know what he is doing.

Take care,
Wendy

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16 years 6 months ago #8219 by Patricia
Replied by Patricia on topic Were do I begin.
Yes you said the left ureter was involved right? And as i remember correctly there was a time they said the left kidney may have to go? I would be angry too...its a mind altering decision to consent to cysectomy and my question to this surgeon is why is he so sure of his decision....if he dug deep to get the tumor in the ureter its a potential hazard to administer the BCG....If its really Stage 3 its already into the muscle right?...Does he just not know how to do a cystectomy? Whats his track record...ask. Personally i'd go back to Australia and wait til Christmas until i'm 65 and go on Medicare...unless they've changed that age again!! I hope Tim replies as he's in the UK....can you not have any choice of surgeons there?
Pat

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