had my first turbt

9 years 2 months ago #48247 by sara.anne
Replied by sara.anne on topic had my first turbt
There is no definitive way to state that a tumor is high grade or low grade by looking at it. The cells must be examined by a pathologist. Urologists have lots of experience and can make "educated guesses" but are often proven wrong.

A physician's "preference" is molded by what is considered good medical practice.

Will be thinking good thoughts for your results.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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9 years 2 months ago - 9 years 2 months ago #48246 by fighterm
Replied by fighterm on topic had my first turbt
Hi Sara Anne, thank you for your reply. I saw the cauliflower on the screen, so can it be anything else besides cancer? Is it possible to have a benign cauliflower? The uro said it looks like papillary carcinoma. Another question. Do different grades look the same? Can you say "low grade" by looking at it? I don't know my grade now, but I thought that it depends on uros preference if he wants to use BCG or not for the low grade. I tried to find some literature about it, still not clear about the matter. I put up some information from the NCI site, they give statistics for different protocols, still not clear about the low grade. Anyway, I will discuss with my uro next time and if he says no than no it will be. Actually, in Canada its not easy to get an appointment with a urologist. If you have cancer, then its quick, but for other problems its 6 months to a year wait on average. I will ask for a second opinion on the pathology report. Maybe he agrees.

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9 years 2 months ago #48245 by sara.anne
Replied by sara.anne on topic had my first turbt
BCG has been shown not to be very effective with low grade bladder cancer and is only used when it keeps returning multiple times....under those conditions the only other option is radical cystectomy so it is worth a try.

BCG side effects are also cumulative. You certainly would not want to sensitise yourself now when you really might need an option later if the disease progresses. In addition, while most BCG side effects are not serious and are relatively easily treated, some rather rare ones can be very serious and are not dose-dependent.

Any physician who prescribed BCG for grade 1 pta (papillary Ta stage) would be at best subject to censure by his hospital tumor board and at worst looking toward a malpractice suit. In addition, insurance surely would not cover this.

Meanwhile, we will hope that you do not have bladder cancer

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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9 years 2 months ago #48239 by fighterm
Replied by fighterm on topic had my first turbt
Hi Cynthia, you did not miss anything. I am waiting for a pathology report on Feb 18. But I am preparing for the discussion with my uro, thinking of different scenarios. Let's say I have a grade 1 pta (papillary Ta stage), the best biopsy result. What is better to wait 4 months (he mentioned 4 months, I think this is Canadian way of health care savings) doing nothing or to ask for a light BCG treatment to decrease side effects, but still decrease the risk of recurrence.

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9 years 2 months ago #48238 by Cynthia
Replied by Cynthia on topic had my first turbt
Fighterm, I saw on another post that you were planning to ask for a reduced BCG treatment on another post. I am confused I thought you were still waiting for your pathology to come back to confirm bladder cancer and if so what stage and grade. Did I miss something if you are already planning you treatment path? Sorry if I am not keeping up.

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 2 months ago #48201 by CatherineH
Replied by CatherineH on topic had my first turbt
I don't think you "need" to stay in bed until the cath is removed. Just let your body guide you. If you're tired, rest, and don't do anything that is physically taxing. The cath is a foreign object and your bladder doesn't like it. Plus the anesthesia can leave you feeling tired as well.

After my TuRBT, I went home with a catheter but went back the next morning and it was removed. I saw no blood at all afterward and that afternoon I was out doing errands. Everyone is different as to how they feel afterward.

After my partial cystectomy, I had a catheter for almost 4 weeks. That was a bit more challenging and inconvenient. I had pretty strong spasms for the first few days until my bladder relaxed and my brain quit telling it to contract on cue.

I'm glad your procedure went well otherwise. Hoping for a good report when you go back to the uro.

Best wishes... Catherine

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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