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8 years 4 months ago #36901 by Patricia
Charlene,
First of all where are you? A second opinion always recommended even with invasive bladder cancer. A re-TURB is recommended within 2 to 6 weeks after the first...this to insure that all margins are clean and the tumor has not seeded. A high volume Cancer Center or University center which deals with a LOT of bladder cancer is where you want to be. " Cure " hmmmm...your best bet is bladder removal but this cancer is very very sneaky..it likes to migrate which is why you need a specialist that knows what he is doing.
I was diagnosed 8 yrs ago with T2 invasive bladder cancer..and though my pathology was correct in my town here in Ohio i traveled to Memorial Sloan to a very top surgeon for the second opinion. The slides i brought with me went into the trash can. He recommended a second TURB right then...2 days later. He went in and got the rest of what was left in there and the margins which my original uro did not get. This gave me wiggle room to decide on diversions...another hard decision. Being female i decided finally on the Indiana Pouch and once trained (and you have to train them all) i cath 4 times a day and can sleep through the night...8 hrs. I drink when i'm thirsty. I've not had a UTI in 8 yrs nor have i ever reused a catheter as my insurance pays for it.
I'm not sure about the Kaiser system.....i don't think you have many choices with them? Can you go to USC/Norris? I would recommend Dr. Sia Daneshmand there
http://www.uscurology.com/doctor/bio/view/126223
Pat....p.s. actually they're all great there

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8 years 4 months ago #36900 by Lynda
Charlene -

It is a blow to hear the words from a Dr. isn't it? And to have them tell you that they want to take out a vital body part...

My thought is that the Dr. wants the bladder removed to prevent possible spread. Did he/she discuss your options? As hard as it was to hear the diagnosis, hearing my options made it easier to deal with. Then I could do specific research on each. Knowledge is power.

I have an indiana pouch and my life is much improved. No more pain, problems, or cancer. It is a new normal for the rest of my life and while it's not always been pretty, I wouldn't change a thing.

Keep asking questions, we are all here for you.

Lynda

Lynda

3 years UTIs
Indiana Pouch - July 2010
Pulmonary Met. - May 2011
Chemo started June 2011

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8 years 4 months ago #36897 by sara.anne
Welcome, Charlene, to a group I know you didn't want to join.
But, as you probably have seen from your readings here, there is light at the end of this tunnel. Lots of us have been where you are, and are still here to talk about it!

To answer your questions, it does appear that what you had was a Transurethral Resection of Bladder. The clue as to why the urologist is recommending RC..removal of the bladder...is that your tumor was "high grade." The means that it is aggressive and can come back and has the potential to spread.

Many people here have had bladder removal, and while it is not fun, when it is over they are living normal lives again; this is one treatment that does "cure" bladder cancer!!

I know that others will be chiming in with advice for you, so I will leave it to them.

Good luck to you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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8 years 4 months ago #36891 by CharleneMc
Hi. I've been quietly reading this forum for a couple of weeks without posting. I was recently diagnosed with bladder cancer and I'm still pretty numb with the news.
It began with blood in the urine, blood tests, a ct scan, a transurethral resection (is this a TURP?), and yesterday, a pathology report.
The pathology report says the tumor is a "high grade invasive urothelial carcinoma. The tumor invades smooth muscle consistent with muscularis propria, and no lymphovascular space invasion identified."
I had done some homework before my appointment yesterday, so when I heard there was muscle involvement, I fell apart.
Although my husband and I listened carefully to my uro doctor, I can't remember all he said, except that the normal protocol is removal of the bladder.
The mass was 2cm, and he said he aggressively removed it, so I guess I don't understand, if it was all removed, why would I need to lose my bladder? Is it to prevent recurrence?
I know I'll have a lot of questions, I'll be facing some hard choices. But I think I'll leave just the one for now.
I'm so glad to have found this message board. Everyone seems very nice and knowledgable and willing to share from their experience.
Oh...I'm 60..well 61 as of last weekend, and I live in Northern California, and I am in the Kaiser system.

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