Chemo Day 64 - change of plans

After doing my research that I posted yesterday re micropapillary bladder cancer, I sent my oncologist the following email:

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While on vacation, I've been doing some reading about micropapillary bladder cancer, which the pathologist at GW did not identify in my slides, but the Hopkins path did for both the first and second TURBT's.  Abstracts and references to these studies are at the bottom of this email.  After reviewing these studies, I have increased concerns regarding continuing neoadjuvant chemo.  The MD Anderson study concludes that delaying RC for neoadjuvant chemo suggests a lower OS:   "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."  (The Léon Bérard study is even worse; it suggests I should be making funeral plans now.)  Abstracts of both studies follow. 

My questions to you are as follows:

1.  Is there more recent data on the optimal treatment for micropapillary bladder cancer?

2.  You told me that neoadjuvant chemo had a small but statistically significant increase in OS.  Is that true for micropapillary bladder cancer? 

3.  If micropapillary bladder cancer is as chemo-resistant as these studies say it is, then does it make sense to do the 4th round of neoadjuvant chemo starting next week, or should we just do the RC as soon as possible?  Not that I'm impatient, but I'm trying to figure out what is best for my specific case. 

Your ongoing thoughts and recommendations are most welcome. 
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Last night, she sent me the following response: 

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I totally understand your concern regarding these histopathologic subtypes of bladder cancer.  Almost all of these data are retrospective, the reason being they are rare histologic subtypes, both the micropapillary and the nested variant.  I also share your concern about the aggressiveness of these variants but I am still in favor of the neoadjuvant therapy as we have done and there wouldn't be a whole lot of newer data nor would there be prospective trials on this.  The landmark trial that looked at neoadjuvant chemo did not stratify by histologic subtypes or variants (just urothelial/transitional).
While we planned for 4 cycles of therapy, this is an arbitrary number.  The earlier studies using MVAC used 3 cycles of neoadjuvant chemo.  Since adoption of Gem/Cis as an alternative chemo, a lot of institutions stipulate around 3-4 cycles with the use of Gem/Cis.  One thing we can do is once you come back next week, I can leave a script for you to obtain the PET/CT scan and we can hold off on the 4th cycle.  It would be good to see Dr. Schoenberg back soon as well to at least gauge your potential date of surgery.  I would also suggest to perhaps let Dr. Schoenberg know that you've done 3 cycles of chemo.
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(Note: she told me last week that she would be on vacation next week, so she can't meet with me.)  My reading of her response is that she believes neoadjuvant is proper for me ("I am still in favor of the neoadjuvant therapy as we have done and there wouldn't be a whole lot of newer data nor would there be prospective trials on this.")  She also suggests that there likely will never be sufficient prospective treatment data, since micropapillary is too rare to do a double blind study and develop definitive treatment recommendation.  The retrospective data that I summarized yesterday appears to suggest that immediate RC is better than neoadjuvant chemo followed by RC, but she's looked at a lot more research than I have, and she's drawn her own conclusions using her professional judgment, and I respect that.   

Part of me wishes that I had read the research that I highlighted yesterday back in January.  But another part of me recognizes that at that time the unanimous recommended course of treatment for me was GemCis chemo followed by RC.  The doctors that recommended that - Dr. Aragon-Ching at GW, Dr. Kim at Hopkins, Dr. Schoenberg at Hopkins, and Dr. Shipley at Mass. General - all are very knowledgeable and well-regarded.  I do not pretend that my review of a few articles makes me more knowledgeable, or even close to the same level of knowledge, as them. 

If anything, this reinforces how medicine is an art, not a science.  There are continual judgment calls that must be made where one must weigh conflicting and inconsistent data.  I'm not going to start chasing my own tail instead of listening to the professionals.  But I am going to continue to learn to ask the right questions so I can understand the alternatives. 

In any event, based upon my exchange with Dr. Aragon-Ching, I'm not going to start the 4th round of chemo on Monday.  Yay!  Instead, next week I'm going to have the PET and CT scans to see if there is any evidence of metastization.  I'm also going to Dr. Schoenberg for a consultation.  I also intend to contact Dr.Kamat at MD Anderson for his input, as he has specialized in studying micropapillary bladder cancer. 

I don't know where all this will take me.  Maybe I'll end up doing Round 4 on April 16 (but I hope not).   Maybe Dr. Schoenberg will want to schedule me for surgery, or just to look at my bladder.  Maybe Dr. Kamat will have other ideas.  Maybe the scans won't be negative, in which case all bets are off.  One day at a time.