The map of the journey--Andy

11 years 4 months ago #29835 by Andy
The map of the journey--Andy was created by Andy
Hi Mike -

I enjoy reading your posts here and on BCAN. I just joimed this group and I reading like crazy! I go see my uro tomorrow and will take a copy of your flow chart - it's excellent. I go to UM Cancer Center for my consult on Friday. I'm supposed to start BCG on Feb. 3rd but have seen more and more info about how much BC is understaged, and since I'm T1G3, I want to be sure I'm on the correct path. Lots of folks in my situation have elected to go with the RC right away as it seems to have the best odds. Your thoughts? Thanks again for your posts, they alleviate alot of fears, mis-information, and have helped many make an informed decision. Best of luck in the future.

Andy
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11 years 4 months ago #29837 by mmc
Replied by mmc on topic The map of the journey--Andy
Andy,

Thanks. UM may (should) want to reTURBT to be sure that it is staged correctly. If the pathology is confirmed they would most likely recommend BCG or a combination of BCG with something else (e.g Interferon).

If the BCG is effective, that would probably be the route to go for now. Of course, if there is a recurrence then you pretty much know the direction things are going and my personal opinion would be to make the call for RC at that time.

Hopefully, the BCG would be effective though and you never have to make that call.

If UM does not suggest reTURBT, I'd ask them why not? My approach is to be very aggressive about treatment. Others, including doctors, try to keep the bladder for as long as possible. That's fine as long as it isn't just giving the cancer more opportunity to sneak out of the bladder.

In my case, I'm pretty sure the cancer had just barely gotten through the inner layer to the muscle when I got my bladder out. 41 lymph nodes went with it and all were clear so I'm hoping that I got mine out in time.

I can tell you that if you go the BCG route with the regular cysto schedule (every 3 months to start) that cytologies are very important. Even though they couldn't see anything on my cystos, it had come back. I had blood in the urine though so I knew something was wrong and I was right. In my case it was CIS which can be invisible.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
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11 years 4 months ago #29840 by kcnorthstar
Replied by kcnorthstar on topic The map of the journey--Andy
Andy,
Your post brings up the dilema of T1G3. The standard treatment is BCG and that is the route most people take. Going right to RC is still an option, but is considered agressive treatment. If you go straight to RC you may be removing a bladder that could have been saved by BCG. On the other hand, if you go the BCG route there is the possibility of recurrence and progression. Yes, going straight to RC for T1G3 has the best odds for a cure, but RC is not without risk. The important thing is to read and learn all you can about BC and then make a informed decision. You also need the best doctors you can find.

KC

Age 59
DX Jan 2006 - T1B G3
RC - Neobladder June 2006
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11 years 4 months ago - 11 years 4 months ago #29842 by Cynthia
Replied by Cynthia on topic The map of the journey--Andy
I have moved this to its own thread Andy as I think it deserves its own space.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
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11 years 4 months ago #29843 by Andy
Replied by Andy on topic The map of the journey--Andy
Thanks Mike and KC -

I did have a second TURBT 2 weeks after my 1st one as the tumer was too large for my uro to get in one shot. She did another biopsy which confirmed T1G3 but I'm glad the UM pathologists will be looking at the slides. I know this cancer is often undergraded soanother opinion will be invaluable. I'm a little concerned it's been almost 6 weeks since my last TURBT and I haven't started BCG yet, but my uro (who is great)said my bladder was a mess and had to completely heal befroe she was going to start the BCG. I see her tomorrow and hopefully will get the all clear to start BCG Feb. 3. She's good with me getting another opininon at UM on Friday - information is power! Have a good week -

Andy
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11 years 4 months ago #29844 by mmc
Replied by mmc on topic The map of the journey--Andy
Andy,

She's right about the waiting for healing before starting BCG. You do not want that stuff getting in your blood stream.

KC is also right about being aggressive with treatment when T1. When I did BCG I was T0 and it was only CIS. BCG works best on CIS but unfortunately, I was in the minority of people that get a severe reaction and I was taken off of BCG.

I really, really wanted to stay on it if at all possible given the great track record of BCG with CIS but that was just not to be.

It's also great to hear your uroligist is supportive of you going to UM. My opinion is the best urologists are the ones that support and encourage getting you to a top bladder cancer hospital. Those are the ones (I think) truly care about patient outcomes.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
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