T1 High Grade Papillary Urothelial Carcinoma

4 years 7 months ago - 4 years 7 months ago #58168 by Alan
As we now know why cystectomy was suggested.....keep asking questions. Here is a link with a good summary of the 3 types of diversions, just copy and paste: my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion

I am also attaching in attachment form a summary of questions that some may ask. there are too many mentioned but cull down to the best one's for your Dad's case.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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4 years 7 months ago - 4 years 7 months ago #58167 by Alan
Fox Chase in Philly from what I remember has a very good reputation and should have good docs. I always stand corrected if someone has another option. Please check back as I have tried to contact Sara Anne who I believe has a better handle on this type of bladder cancer and some bookmarks on the best way to attack. Always remember none of us are doctors but, people that have been there and done that. Someone will still be around lurking and have some more info. The words I still like on bladder cancer is "this is treatable and beatable"!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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4 years 7 months ago #58166 by sara.anne
Replied by sara.anne on topic T1 High Grade Papillary Urothelial Carcinoma
Micropapillary does change things. Here is an abstract from MD Anderson ...it is from 2007, but things have not changed and it summarizes things pretty well

"Micropapillary bladder carcinoma is a rare variant of urothelial carcinoma. To improve understanding of this disease, the authors performed a retrospective review of their experience. The authors reviewed the records of 100 consecutive patients with micropapillary bladder cancer who were evaluated at The University of Texas M. D. Anderson Cancer Center. The mean age of the patients was 64.7 years, with a male:female ratio of 10:1. The TNM stage of disease at the time of presentation was Ta in 5 patients, carcinoma in situ (CIS) in 4 patients, T1 in 35 patients, T2 in 26 patients, T3 in 7 patients, T4 in 6 patients; N+ in 9 patients, and M+ in 8 patients. Kaplan-Meier estimates of 5-year and 10-year overall survival (OS) rates were 51% and 24%, respectively. Bladder-sparing therapy with intravesical bacillus Calmette-Guerin therapy was attempted in 27 of 44 patients with nonmuscle-invasive disease; 67% (18 patients) developed disease progression (>or=cT2), including 22% who developed metastatic disease. Of 55 patients undergoing radical cystectomy for surgically resectable disease (<or=cT4a), 23 received neoadjuvant chemotherapy and 32 were treated with initial cystectomy, with no significant difference noted in stage distribution between the 2 groups. For the 23 patients treated with neoadjuvant chemotherapy, the median OS was 43.2 months with 32% of patients still alive at 5 years. For the 32 patients treated with initial cystectomy, the median survival had not been reached at the time of last follow-up, with 71% still alive at 5 years. Micropapillary bladder cancer is associated with a poor prognosis. Intravesical therapy appears to be ineffective in this disease and patients with surgically resectable disease should be offered early radical cystectomy."

What this says, in brief, is that radical cystectomy is the best treatment. While this is very serious surgery, most patients recover very well and lead normal lives after recovery. I know that Alan has handy a reference to a guide to the various types of surgical diversions available that your family should find helpful. He will no doubt post it soon.

Don't be overly concerned with the "survival rates" listed in the abstract; these patients averaged 65 years old (meaning many were older) and many may have succumbed to other health issues that come with age.

There is no way to guess what might have caused bladder cancer in many otherwise healthy people. One of the few things that is known as a cause is smoking but many of us have never smoked and still show up with this diagnosis.

Wishing you and your family all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 7 months ago #58165 by swhite
He is being seen by one of the top docs in this field at Fox Chase in Philadelphia which is why I didnt question his treatment at first, but then the more I read the more confused I became. We are all so shocked with the diagnosis since he is one of the healthiest people we know. He keeps saying "how can I be this sick and have zero symptoms". It's heartbreaking so I am grabbing at straws looking for any and all advice to help him through this terrible time :(

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4 years 7 months ago #58164 by Alan
I hope Sara Anne chimes in also. Micro papillary is one of the more aggressive types and rare if I have my facts straight. For this you want to go to one of the very best hospitals. There are few members that have had this so I trust they also will chime in. What area of the country do you live? Someone may have a great hospital or teaching hospital close.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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4 years 7 months ago #58163 by swhite
Since you both seem very educated in this matter I am wondering if this new information I received changes anything. The report says: Non Invasive high grade urothelial carcinoma with micropapillary features. It invades the lamina propria but does NOT invade muscularis propria or lymphvascular.

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