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Evaluate the role of initial cystectomy re:high-grade T1 blc

11 years 1 week ago #11210 by Rosemary
PS,

I don't mean to frighten anyone here, but, the point of "evaluation" was brought up and for me, this is the face of it.

Really, thanks, it helps to write things out.

Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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11 years 1 week ago #11208 by Rosemary
When I got the T1 G3 Pathology report (after 6 weeks earlier being diagnosed with Ta G1 disease), the first thing my good Dr. did was to swiftly make an appointment for me up the road to UNC in Chapel Hill to the Urological Surgeon, the question in his mind being, "Should she hold on to her bladder?"... and his reason for this being, "because of your age."

When I got to Chapel Hill and saw the good Dr. his words to me (after a short interview) was, "I think I know where Dr. P.... is going with this, it's because of your age."

Evidently, they were looking down the road for me....

...because if I can normally expect to live as long as my Mother, (30+ more years) then I have a long road of trying to stay on top of the risk of recurrance. After the good Chapel Hill Dr. performed a biopsy and CT scan, he became all smiles and seemed to think that the chances were real good of preserving the bladder.

So, I guess the point is this....30 more years of fear and risk and still the chance (however small) of recurrance.....

At the same time of my diagnosis, my co-worker's choir mate was diagnosed with invasive disease at about the age of 70. The thing is, she had been diagnosed with Superficial disease 10 years before and had thought it was all behind her.

Luckily, though after much depression and anxiety, she was timely enough to have her diseased bladder removed and replaced in Chapel Hill by my good Surgeon and then all became well. Now, two years later when I remember to ask my coworker about how her choir partner likes her new bladder, the answer is always the same....."She is very happy."

The point of all this is, "is this worth it??" And in my case, considering severe chronic reactions triggered by BCG's, "has it been worth it?"

Thanks for letting me blog a little here!!

Regards to all,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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11 years 1 week ago #11193 by wsilberstein

Initial clinical and pathologic factors can be identified that predict a high risk of progression and are reasonable indicators for initial cystectomy.

They conclude that radical cystectomy can provide a very high cure rate for these patients and should be considered early in the treatment plan.

Dan,
If these initial clinical and pathologic factors can aid in the decision, wouldn't it be great if we all knew what they were. 7 years ago when I was diagnosed with high grade papillary carcinoma + CIS, the matter of cystectomy was not even discussed. Of course, I was Ta and not T1, and maybe that makes a difference, but after 7 years without a recurrence, I'm not sorry the issue of cystectomy was never broached. Of course I still have the requisite follow up cystoscopies and the ansiety that one day something will be found, but it's not like everyone who has a cystectomy never has progression to ureteral involvement, kidney involvement, or metastasis. In the end, cancer never lets you forget.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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11 years 1 week ago #11191 by dmartin12358
I've read a few posts recently from those whose high grade cancer has progressed, they are now facing either muscle-invasive or metastatic blc, so here's another article written by a USC/Norris urologist, describing their philosophy on treating high-grade cancer.

My post is not intended to cause concern (hell, everyone diagnosed with any cancer is concerned at the getgo!) or sway minds, rather, just inform.

Dan

========================
The ojective of the study was to evaluate the role of initial cystectomy in the management of high-grade T1 bladder cancer.

A selected review of the literature was performed to evaluate outcomes with intravesical therapy vs. initial cystectomy in this patient population, with a focus on identifying risk factors for failure of conservative therapy.

Many studies in the literature fail to include central pathologic review and re-TUR clinical staging, and there are no randomized studies comparing outcomes with these two initial approaches. Retrospective studies of patients with high-grade T1 tumors treated with initial intravesical therapy suggest that approximately 30% of patients will ultimately require cystectomy, and 30% will die of their disease with or without cystectomy. The risk of progression continues for the life of the patient, and late recurrence and progression is common. Initial clinical and pathologic factors can be identified that predict a high risk of progression and are reasonable indicators for initial cystectomy.

They conclude that radical cystectomy can provide a very high cure rate for these patients and should be considered early in the treatment plan.

Dx 7/04, CIS + T1G3, Age 50
2 TURBTs
12 BCGs
Cystectomy 8/05 USC/Norris
So far, so good (kow)

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