HIGH GRADE INVASIVE PAPILLARY UROTHELIAL CARCINOMA WITH MICROPAPILLARY FEATURES

6 months 1 week ago #61374 by Tiki1954
Thank you for you for post.  It is so helpful to hear from others going through what I am going through.  I'm sure I will be back with more questions as I get further into all this and just want to again say how much I appreciate your insights.  Best wishes, Joyce

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6 months 1 week ago #61371 by mystri
Hi Joyce.  My name is Giff, and I could have written your entry, that is exactly what I went through 5 years ago including the Chemo treatments, surgery, stoma etc.  I am an 82 year old guy that is still pretty active.  I am now in immunotherapy to try to try to control any spread of the cancer.  I will not take much of your time or forum space, but will just say that we have been dealing with the exact situation that you described..  Although we live in Southern Mississippi, we used MD Anderson in Houston, TX for everything except the Chemo treatments and did those here.  I know you will have questions about the stoma situation, how to handle that, supplies, and a multitude of other things.  I won't go into all that here, yet, but my wife has become an expert in taking care of me. and any question you may have, can probably be answered by one of us so keep my info handy as you proceed through the process.  We also belong to the local chapter of the UOAA which has been extremely helpful in our learning experience, so you may want to try to find a local chapter near you.  
And just as an aside, we moved here after retiring from the Air Force in Southern California (Vandenberg AFB) and I grew up in Santa Monica, so am familiar with that area of the country.  
Blessings and the best of luck in your journey.
Giff Ormes

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6 months 1 week ago #61367 by joea73
Radical cystectomy is recommended for male and  female patients when there is a reasonable chance that bladder cancer cells, which we cannot detect by any means because it is so small could have migrated to other organs near the bladder.  It is often the case for muscle invasive bladder cancer.  Yet, if the tumor has just progressed into the muscle tissue (T2), sometimes partial cystoscopy is recommended.  In your case, the tumor was T1HG after the first TURBT, according to the chart, the recommended treatment is just cystoscopy.   Also, I have noticed that the 2nd TURBT which was scheduled  two months from the first TURBT. It seems to be too long.   AUA guidelines says the second TURBT must be done within 6 weeks from the initial TURBT.    The second TURBT is to scrape wider area to make sure there will be no residue of cancers, and also  to scrape deeper to get specimen from the muscle later to check if the tumor had penetrated into the muscle tissue.  Studies found that T1 tumor is  sometimes understaged at the first TURBT, meaning that even the first TURBT resulted in T1,  a certain percentage of the tumor had already progressed to the muscle tissue.  If the tumor had progressed to the muscle tissue, it requires neoadjuvant chemotherapy followed by radical cystectomy.  So, the confirmation if it is truly T1 or it had progressed to the muscle tissue is important to determine the next treatment.   MD Anderson's study says if  Micropapillary is T1, cystoscopy should give 100% disease free survival rate in 5 years.    I can think of 4 possible recommendation at 2nd opinion.

1.     Continue with bladder preservation treatment which was recommended by the original urologist --- less likely
2.     Go strait radical cystectomy with or without neoadjuvant chemotherapy
3.     Expertise 2nd TURBT to determine if it is indeed T1 or had progressed to muscle tissue (MIBC)
3.1   if it is T1,  do cystoscopy
3.2   if it is MIBC, radical cystectomy with or without neoadjuvant chemotherapy
4     Go strait to cystectomy

best
The following user(s) said Thank You: Tiki1954

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6 months 1 week ago #61366 by Tiki1954
Thanks again and also for suggesting to find out if it would be a cystectomy or radical cystectomy. I thought women had to get the radical cystectomy always.
-Joyce

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6 months 1 week ago #61365 by joea73
Great.  I have read someone flying from Alaska to MD Andersons in Texas for the treatment  of his bladder cancer. So it is so nice to have a reputable hospital near by.  I love San Diego.  When I was young, I use to look at a picture of La Jolla on a wall of my room. I always wanted visit there.  That was 60 years ago.   Since then I visited San Diego a few times, but never had gone to La Jolla.  Perhaps things much have changed a lot.  

If the second opinion is to remove the bladder, you may want to clarify if it is cystectomy as the chart shows for micropapillary or radical cystectomy.  Radial cystectomy not only removes the bladder, lymph nodes near by, also organs near by such as ovary.  Cystectomy is just removing the bladder with other organs intact.  I expect they would recommend cystectomy because you tumor is till in the surface lining of the bladder.   In terms of the choice of urinary diversion, you can come back and ask the question  which urinary diversion will suit you best in this forum.  I am sure you will get many feedbacks.   

Meanwhile, I hope you enjoy the summer down in my favorite city.

best

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6 months 1 week ago #61361 by Tiki1954
Thank you so much for the information you shared and the chart!  It is very helpful.  I am getting a second opinion on my treatment from UCSD's Moores Cancer Center here in the San Diego area later this month.  I'm fortunate to have one of the NCI's Comprehensive Cancer Hospitals so close by.    I'll keep everyone posted!
-Joyce

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