Just diagnosed with stage 3 CIS

14 years 11 months ago #25021 by Stephany
Replied by Stephany on topic Just diagnosed with stage 3 CIS
Mike makes a good point. I think Doran's said something like "Radical cystectomy with navel stoma. Cath through navel."

or something like that.

Stephany in Iowa
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14 years 11 months ago #25020 by Stephany
Replied by Stephany on topic Just diagnosed with stage 3 CIS
One step at a time, Doug. Take your time with your decisions. Have a long discussion with the stoma people. Sleep on it. You've got a couple of weeks.

You've already come to grips with the difficult decision. Have it out, so you can forget about it.

Keep us informed, and let us answer any new questions that come up.

Stephany in Iowa
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14 years 11 months ago #25019 by mmc
Replied by mmc on topic Just diagnosed with stage 3 CIS
Doug,

You are certainly going about this the right way. Yes, the sooner the better on the surgery. You want to get it before it gets to any lymph nodes. Tell them you want them to take lots. They took 41 when they did my RC (with neobladder) and all were clear so no chemo is required if they catch it prior to lymph spread.

My ostomy nurse (and it was also in the papers they sent me home with) suggested getting a Medic Alert type bracelet. You should put the diversion type you have (including the location if it's not easy to find) with instructions to catheterize every 4-6 hours.

Mine says "Neobladder, catheterize every 4-6 hours". It's just in case you wind up in an accident or something but you don't want them trying to cath the wrong place.:blink:

You don't want to order it until you know what you wind up with. You may select Indiana Pouch but they won't know if they can do it until they are in there.

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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14 years 11 months ago #25017 by Patricia
Replied by Patricia on topic Just diagnosed with stage 3 CIS
Doug.....i'm stumped....don't even see Dr. Brian Lane on the roster for surgeons at The Cleveland Clinic.......Is he new?
Pat
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14 years 11 months ago #25016 by Blnmakerr
Replied by Blnmakerr on topic Just diagnosed with stage 3 CIS
Received the second opinion today from Dr. Eric Klein of The Cleveland Clinic, and he unfortunately confirmed the first diagnosis. His opinion is to have the RC along with prostate removal ASAP (and the sooner the better).

Dr. Klein said it would take a week to ten days to get the pathology back on the lymph nodes to determine if the cancer had spread beyond the bladder and prostate. If it has, he is recommending followup chemo after the surgery. Not sure I can handle the chemo......

I am setting up an appointment with the stoma department at The Cleveland Clinic to discuss in detail the Ileal Conduit and the Indiana Pouch as my two options for urinary diversion. I will also be making an appointment tomorrow with Dr. Brian Lane of The Cleveland Clinic to discuss in more detail the surgery. I would hope to be able to schedule the surgery no later than the week of April 20th.

I want to thank everyone for their invaluable input and help in making this most difficult decision....

Doug
Blnmakerr
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14 years 11 months ago #25011 by balihigh
Replied by balihigh on topic Just diagnosed with stage 3 CIS
Doug,
You are at an excellent facility, the Clevelend Clnic. With bladder cancer that is so important. I went to Sloan Kettering from NY because I wanted a doctor that did the operations on a daily basis. Everyone who has been treated at the Cleveland Clinic gives it rave reviews. I would trust them.
Balihigh

female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit
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