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Afraid and needing advice

9 years 4 months ago #31707 by sara.anne
Cher, you have received a lot of great advice from the experts in our wonderful family, so I won't give you any more. EXCEPT to listen to them!!!

There are lots of us out here living with and surviving this disease. You and your husband will as well!!

With best wishes,

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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9 years 4 months ago #31705 by Cynthia
Cher,

As for the TURB it depends, on the depth of the tumor, placement of tumor and how much they have to do. My local Urologist who did my first was not as practiced as my next Urologist (head of Urology MGH) and I had a lot of problems following; he did not place a catheter and should have. Many have their first TURBS with their local Urologists. But if margins are not clear and someone who is practiced in doing pathology for bladder cancer does not do the report they often find their selves back at stage one when they go for a second opinion.

Please read this to your husband.

Many do survive this and go on to climb mountains, run marathons, race cars and live full live. But all that do enhance their chances of doing so by doing certain things. First of all unless your Urologist is a specialist in bladder cancer he is probably a generalist. The experts that offer you the cutting edge and time won expertise see nothing but. After a review at a center of excellence you may decide to continue treatment with your original Urologist but you have had a reality check and know you are going in the right direction. This is your window of opportunity and it is up to you to stack the cards in your favor.

Now give your wife a big hug you are so lucky, we see spouses run the other way and it breaks our hearts. On the other hand one of the strongest things we see is the power of two when a couple faces this as one and works together to find the best care. Be gentle with her it can be easy to not do so when you are under this kind of stress; don’t forget that when you got bladder cancer in a way so did she.

Don’t forget we are here for you.

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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9 years 4 months ago - 9 years 4 months ago #31704 by Humpy
Both my TURB's were out patient, and went home with a foley for 3 days.

Jim

Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan

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9 years 4 months ago #31703 by Nix
I am so happy that Mike, Pat and George have added their advice. You are in very good hands with them. I did see Dr. Lockhart/Moffitt for a second opinion. He came highly recommended, and I liked him a lot. Since I had to go the BCG route, I transferred over to Dr. Wade Sexton. When I find valuable information, I print it out and take with me. You and your husband are your best advocates, and you are gathering a lot of information, which is the right road to be traveling right now.
If possible, maybe you could make an appointment with your Uro, in the next day or two, write down all your concerns and questions - then make a decision. If you stay with our Uro to do the TURB, then follow-up with a second opinion @ Moffitt or Miami, and take all the information with you, pathology, slides, reports. As an extra back-up I had my pathology and slides sent to John Hopkins thru my Uro's office.
Nancy

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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9 years 4 months ago #31702 by Patricia
Its not unusual for them to schedule asap especially since this has been ongoing. And i agree its mind boggling..you really don't have a chance to get your ducks in a row. He would not have done a biopsy during cystoscopy...ouch...
I had the same thing happen to me only i presented with gross hematuria and within a week i dutifully followed my internists recommendation for a uro and had a TURB locally. I was about as dumb as you can get about bladder cancer..never heard of it. Just scared. Once my brain cells connected after the procedure i started researching top cancer centers and top uro/surgeons in the field. There were none close to me. I was fortunate in that i have a PPO and could go whereever and i chose Memorial Sloan in NYC for my second opinion. I also got one of the top uros in the country who took one look at my slides and said "re-turb" which he schedule for 3 days later. He is in the OR 4 days a week and probably does about 20 TURBS a day...and over 90 reconstructions a year. I only had one very small tumor which was invasive but he got it all plus the margins. I had no bleeding afterwards so the catheter came out about l/2 hr after i woke up and i peed in a cup and left the building an hour later. He doesn't believe in indwelling catheters unless there is bleeding and he rarely has any. My local uro on the other hand insisted on 3 days with the catheter...to which i pulled out at day 2 as it was driving me nuts!! Protocol depends on your doctor and the institution. I personally had no ill effects or pain with the surgery and went shopping the next day and on a plane the day after. Indwelling caths have shown to cause infection and has been a big problem at hospitals world wide..new guidelines have been now written about that.
Again...the skill of the surgeon makes all the difference. If i had my wits about me when all this first happened i would have gone to MSK for first opinion.
pat

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9 years 4 months ago #31701 by New Diag 7
Hello to all again. I am here to acknowledge that I am indeed reading your replies.
Pat...your information was very helpful! Thank you. You are 100 percent correct, men will take the same road..and need the cattle prod to often incite questions and new direction.
Our urologist really did jump right into the surgery. I am not sure if he did this because he knows the seriousness of the mass (though the mass was not biopsied last Friday during the Cystoscopy) or, that he had a surgery opening. What I do know is he gave him a surgery date only 6 days after diagnosis. Not much time to think. The uro doesn't seem to waste any time with any of this since we met him for the first time on 4/20. I hope that explains why I am in a bit of a panic mode. Who knows! What I do know is I want the BEST for my husband. I recognize the importance of getting all the margins when it comes to a tumor.

As for the TURBT, the uro says my husband will have an "irrigation catheter" in place when he awakens...and if there are no complications, he will only have to stay in the hospital for one night, but will go home with a foley catheter. He said he should be fine to go to work within a week. Does this sound right to all of you pro's?
Did you have an irrigation cath?

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