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2nd lot of biopsies now back

4 years 10 months ago #45774 by sara.anne
Which diversion is best? That is the question!! First, many urologists push the one they know how to do!! That is why it is important to fully explore this issue.

One easy answer...for someone quite elderly, probably the "bag" is the easiest surgery and the easiest to care for if the patient is not able to do a lot for themselves. Women usually do not do as well with the "neobladder," so usually are led to one of the others. For those who are able to care for themselves and are relatively young, the "Indiana pouch," which requires catheterization through a "hole" is often used.

There is no one-size-fits-all, and it depends on your husband's preferences and his confidence in the surgeon doing the surgery.

Great answer, i know!! :P

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 10 months ago #45771 by mareewifeofgreg
Sara Anne - the uro team Greg is under is part of our public health system which is free. He is not able (we don`t think)to see another team in another district health area, under the same public scheme, because he doesn`t live there. if he wanted to pay to see a specialist privately, he could see anyone in the country. In the past he has been under someone privately, & dx with cystitis cystica, glandularis AND Follicular cystitis, spent a lot of money, & still not cured. Since dx CIS, he went under the public systm, cause we knew it was going to cost a lot more money. But, we have been less thatn happy with their management (or should I say mis-management) thus far.
We are now considering to go private again, but to who is the question? Yes, you are right - only someone totally experienced in all of this will be touching my hubby!!
Am wondering what is the preferred type of RC procedure done in the US? & why? Does it depend on each persons situation which is better?
Have just found out today, we will not know when he can start BCG until at least next Tues (Monday is a public holiday)
Thanks for replying.

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4 years 10 months ago #45770 by sara.anne
Maree, you guys have a lot to think about!! I am not sure how the medical system works where you are, but if you were in the State I would say RUN AND GET A SECOND OPINION NOW!! BCG might be worth a try, if they keep a close watch (here it would be every three months) to see if there were any sign of return.

I am amazed if CIS was seen previously and he wasn't put on BCG immediately.

If you decide on bladder removal, you want to be sure that you get a doctor who does a LOT of them and who can handle more than one diversion should the need arise. The skill of the surgeon and his experience is one of the most important things you can control.

Go to "invasive bladder cancer" and "Men and bladder cancer" sections of this Forum and there is a LOT of information on the surgery itself.

BEst of luck to you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 10 months ago #45767 by mareewifeofgreg
We saw the uro yesterday & asked straight up - how bad is this? He said - Yes, its bad. He also said the recent biopsy, Dec `13, showed the same situation as Sept. `13. I said, No, it is different. The earlier one confirmed CIS only. The recent one, T1 tumour removed. He then apologized in quite a flippant manner. He then appeared to be quite unsure how to begin talking to us. Then he offered 2 options - cystectomy or 6wks BCG. He gave no detail about the first option but explained a lot of the BCG protocol. We assumed he was trying to encourage Greg to choose the latter. He left the room & on his return Greg asked him in his opinion, knowing Gregs history, what should he do. He said - have the bladder taken out. This all seemed to give mixed messages, amonsgt other things he said. That they do quite a few removals, that the guy who does them at our public hospital only does the bag technique, not the neobladder. If ppl want that, they go to Auckland & pay.
He was also very flippant when referring to cystectomy, like - yep, we`ll just whip it out. He then went on to say that it is the `cure`, but then conceded that yes, cancer can come back. This man is not the one who did the TURBT in Dec. He also admitted that they, the uro team, had been a bit remiss, been understaging him & been a bit behind the 8-ball, regarding Gregs condition. His words. Greg also told him he was feeling like he`s been mucked around a bit. We are just starting to realize that he was first diagnosed with CIS in April last year, where he was prescribed antibiotics & a TURBT in Dec. Talk of BCG but nothing happens.
Greg has decided he would like to give BCG at least one go before having to make the big decision, but he is a bit scared that the delay might mean it goes deep. I`m thinking if they removed all the T1 in Dec, he must be back to just the CIS at this stage - how quickly does the T1 come back?
we have now informed the uro that he wants the BCG & to start asap. We have yet to hear anything. But that was only yesterday.
Greg would love to talk to someone who has had bladder removed as we know no-one else. He does know they take out prostate etc so he`s thinking, there goes the sex life etc, which is a bit gutting - hes not even 60!

Unfortunately, we had planned to go on holiday for 3 wks, & had some people from Canada coming to housesit for us. They arrive Feb 1. We are happy to cancel holiday plans if it means Gregs gets his treatment, but not keen to tell these nice folks they can still come & stay but we will be here too!
Thanks for reading
Maree

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4 years 11 months ago #45707 by Rockyiss
Maree , First I am sorry I can't answer your questions but I can tell you I was diagnosed with ta grade 2 seven years ago . If mine was a t1 I wouldnt think twice about it. I 'd tell them in no uncertain terms.. get it out , NOW !!
No way would I take the chance of it going deeper, if it went thru one layer I would worry to much about it going futher. Good luck with your husbands app I hope you get good news . Rocky

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4 years 11 months ago #45662 by GKLINE
Maree
Sorry about the news. You have so much technical knowledge about the form of tumor that I cannot hope to know if the result will be bladder removal or not.
But I know that you need not fear the bladder removal choice. I would be more worried if they merely removed a piece of the bladder and then left part if it there. It does not appear as though this is a protocol for bladder cancer. I may be wrong here though.

I guess, if it was me, If there is cancer in the bladder and it has not become muscle invasive, and it is aggressive (as it appears) I would rather be in for a radical cystectomy, and get that bad boy out of there!

I am in a rather aggressive mood today. Sorry. But after looking at my friend Mike McGarry's post today, I am not in the mood for anything other than getting ALL the cancer out of the body as quickly as possible and aggressivly as required.

I am sorry for the tone of this post. But I don't want another person to go through a long drawn out effort to save the bladder only to give the cancer a chance to keep killing.

George
By the way..... I did have a bladder removal 5 years ago and I am still happy I did.

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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