HIGH GRADE INVASIVE PAPILLARY UROTHELIAL CARCINOMA WITH MICROPAPILLARY FEATURES

6 months 2 weeks ago #61354 by Tiki1954
Thanks Sara Anne,
Thanks for the suggestion. I will check and see if Kaiser will allow out of program second opinions.   I actually have a lot of confidence in him. My surgeon said he wanted to wait 8 weeks to allow the bladder to heal from the first TURBT.   He does know how serious my cancer is but suggested taking a conservative approach first since the tumor had not gotten into the muscle.  I realize I am new to all of this but that seemed like an appropriate approach rather than removing the bladder right away.  I'm still trying to wrap my head around the fact I have cancer...I'm not quite ready to make the leap to losing my bladder and other organs just yet.  
-Joyce

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6 months 2 weeks ago #61353 by sara.anne
I would strongly second Alan's advice that you NEED a second opinion at a place that sees lots of relatively unusual bladder cancer situations.  My choice in your area would probably be USC.  They have several extremely renowned experts in bladder cancer.  I would hope that Kaiser would allow out-of-program treatment, or at least a second opinion elsewhere.  You want to be treated by someone who has seen multiple cases like yours.

You also might want to ask your urologist why he/she is waiting two months for a second TURB?  A second TURB is standard care in cases like yours.  Now that the urologist knows where the problem areas are, he can give special attention to them and explore the extent to which they may have spread or not.

Wishing you all the best...and please let us know what happens!!

Sara Anne 

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: Alan

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6 months 2 weeks ago - 6 months 2 weeks ago #61352 by Alan
Joyce! That is my wife's name! Others may chime in on recommendations. I remember USC, UCLA and Cedars Sinai are some that others have talked about as being good. Plus, they are mentioned in the top 3 on my google search (not the City of Hope). health.usnews.com/best-hospitals/rankings/urology/los-angeles-ca

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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6 months 2 weeks ago #61351 by Tiki1954
Thank you so much for your post.  You have given me more to think about, particularly getting a second opinion.  I am with Kaiser Permanente  in Southern California so if you do have information about leading hospitals in the area, I would appreciate it.  Best wishes, Joyce

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6 months 2 weeks ago - 6 months 2 weeks ago #61350 by Alan
Welcome Tiki1954,

I am going to cut straight to the chase. Micro papillary is a very serious tumor, different than regular papillary. As your pathology said  "micropapillary features", you need more information if in fact that is what was diagnosed. While treatable, it needs to be addressed by the absolute best in handling this. Meaning a leading hospital or teaching hospital that sees a lot of bladder cancer. In Texas MD Anderson, the midwest a Northwestern U or U of Chicago hospital. The Cleveland Clinic in Ohio, Sloan Kettering of John Hopkins in New England. There are some in Southern California.

It could be that BCG will still be the answer. It would also work as a second opinion and fresh eyes. This starts with making sure you have a copy of all of your reports. many of these places will let you self refer.

Keep asking away as you have other questions as I am sure others will have observations.

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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6 months 2 weeks ago #61349 by Tiki1954
Hi everyone. I'm new to this forum.  I had my first TURBT last week and just found out yesterday that I have Stage 1 High Grade Non Muscle Invasive bladder cancer, with micropapillary features.  I am trying to wrap my head around all this, glad it isn't in the muscle but freaked out knowing that this is a less common (some would say rare) and aggressive bladder cancer.  My surgeon recommends that we take a conservative approach since it isn't in the muscle.  So I will have another TURBT in 2 months and then start BCG treatment depending on the results of the TURBT.  Just wondering if anyone else has experience with of this.   I'm a 67 year old women, never smoked and no other health issues, so I have to say this has knocked me for a loop.  My husband and adult children as well as other family  members, are being very supportive.  But as much as I am trying to stay positive and take things one step at a time, I can't help thinking about worst case scenarios.

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