1 year 2 months ago #61360 by joea73

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1 year 2 months ago #61359 by joea73
90% of bladder cancers are called urothelial carcinoma.  The rest 10% are made up with several variants.   Because those variants are rare, I do not think optimum treatment have not been established yet.  But micropapillary has a few evidence based studies done is some well known major cancer centers.   I will refer micropapillary to MC.

MD ANDERSONS Cancer Center in Texas had published their study in 2015 for 238 MC  patients with T1 non-muscle invasive bladder caner with MC variant,  and Memorial Sloan Kettering Cancer Center (MSK)  published their study in 2014 for 36 MC  patients.  Cleveland clinic did their study for 38 MC patients and 10 patients with CIS and T1. 

MD Andersons :    5 years disease free survival (DFS)  was 100% with up front cystectomy vs 60% for those who opted for BCG.
MSK                   :    5 years  DFS was 83% for cystectomy vs 75% for BCG.  BCG is acceptable for selected patients.
Cleveland Clinic :   7 received BCG therapy, all ended up having radical cystectomy.  Recurrence 3 and/or progression 4.  All 7 patients had T3 and 6 had lymph node metastasis.  
There was survey done among urologists what they choose if their patients are diagnosed with T1 with Micropapillary, 89% chose cystectomy.  

If you are 85+, the risk of surgery may outweigh than the  longer disease survival rate, but if the chance of longer survival has higher priority, then getting cystectomy seems to be the right choice according to those studies.   Since the average age of people diagnosed with bladder cancer is 74, you are considered as very young.    Incidentally, sometimes urologist  talks about early cystectomy every for regular T1HG young patients as even with the treatment, certain percentage of the patients will progress to muscle layer.

I am sorry you were diagnosed with bladder cancer with micropapillary features but I am glad it was found when it is till in the surface lining of the bladder.

The attached is what MD Andersons uses as the treatment strategy of non-muscle bladder cancer for your reference.

Incidentally, the above is the summary of the talk prepared by Dr. Ashish Kamat of MD Andersons, presented by  by Dr.Peter Black of UBC.

Note:  What I do not know what percentage of your tumors are with micropapillary features, and how that will affect the treatment option.


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1 year 2 months ago #61358 by Tiki1954
Hi Alan,
Your very kind and it is much appreciated!  I hardly ever meet another Joyce so it's nice to know you're married to one!  I am trying to be positive about my new situation and I am trying to just take it one day at a time and not scare myself too much!  Between telling my extended family and friends over the past couple of days I'm kind talked out about my cancer and my feelings about it.  I just want to forget about it for a bit so I think I'll immerse myself  in some kind of summer beach book or mystery novel.  Thanks again.

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1 year 2 months ago #61357 by Alan

I can already tell you have a great attitude and that will go a long ways to beating this. It hit me hard for a day or so many years ago.. I learned it is simply taking one day at a time and you'll come out of this a stronger and better person! Not to say there won't be ups and downs.

As you go ask anything (rants and complaints also accepted) and usually there will be someone that will be around to say "been there and done that", although it may take a day or so as many of us just randomly check the board.

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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1 year 2 months ago #61356 by Tiki1954
Sarah Anne,  I like the way you think and express yourself!  I especially appreciated your sharing that your doctor said he would want you to get a second opinion if you ever had to consider a cystectomy.  This is all new territory I am trying to navigate and it is a bit overwhelming but I do appreciate everyone's insights on all of this. -Joyce

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1 year 2 months ago #61355 by sara.anne
Of course you have a lot of confidence in your urologist!!  If not, you would be running away, screaming!!!

BUT a second look is a  good idea.  In fact, my urologist has told me that should it ever come to the point where we are considering a cystectomy he would INSIST that I get a second opinion.  It is not a matter of not trusting, or having confidence in, your current doctor;  it is taking advantage of every possible bit of information available.  This very well might help you avoid a cystectomy.

Just my opinion

Sara Anne

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