Second opinions

Last Wednesday, I met with the oncologist at GW, Dr. Aragon-Ching.  Her specialty is chemotherapy for bladder cancer.  She recently wrote a book chapter on the subject.  We discussed my treatment options for more than an hour.  For the first time, I understood that there was a chance that my cancer had not actually invaded the bladder muscle, but might have been merely adjacent to it.  She fully agreed with Dr. Hendricks' recommendation that I have the second TURBT on 1/5/12.  She also referred me for a full-body PET scan, as well as a chest CT scan, both to ensure that there was no evidence of distance secondary metastases, and also to serve as a baseline, as I will be having a lot of those scans for the rest of my life. 

On Friday, I had the PET and CT scans.  I got the results this morning - they showed no evidence of spread of the cancer.  The only thing of note was a nodule on my thyroid, almost certainly a benign cyst that eventually I should have checked out, but it's pretty low on the list of things to worry about. 

This morning, Chelsea, Jennifer, and I went to Johns Hopkins for a second opinion consultations with Dr. Mark Schoenberg, a urologist who is head of JH's bladder cancer group.  In advance, I had sent them the slides from my 12/1/11 TURBT, and also last week's PET scan and CT scan.  JH's pathologists re-read the slides, and presented a bit more refined diagnosis of the bladder cancer: 

"Infiltrating high grade urothelial carcinoma with nested micropapillary patterns.  Lymphovascular invasion is present.  Muscularis propria is not present for evaluation; however, given focal micropapillary features, further evaluation to rule out invasion of the muscularis propria is required."

In other words:

1.  My type of cancer (nested micropapillary ifiltrating high grade urothelial carcinoma) is relatively uncommon, especially in someone as young as me.

2.  The diagnosis of Lymphovascular invasion within the bladder is confirmed.

3.  There is no evidence of invasion of the bladder muscle, because there was no bladder muscle in the slides.  More on this later. 

4.  A second TURBT is the absolute correct thing to do. 

We discussed my cancer at length.  Dr. Schoenberg approved of Dr. Hendricks' careful and conservative TURBT, where he focused on removing the tumor, and not taking out too much muscle.  Dr. Schoenberg said that having two TURBT's was becoming the standard of care, since it was absolutely essential that the diagnosis be correct.  He noted how there is a big difference between T1 (the tumor touching the muscle wall) and T2 (invading the bladder muscle).  If it's T2, he'd probably lean towards having chemo before the surgery, then removing the bladder, prostate, and surrounding lymph notes. But he said that the data showed similar survival rates between those who have the surgery, and those who don't. There is virtually no data on comparing the two options (bladder-saving treatment versus cutting it all out) among those with my type of cancer at my age.  I got the strong impression, however, that Schoenberg would recommend cutting everything out.   

We walked away comforted that Hendricks' recommendations were sound, and proceeding with the second TURBT was a good idea.  As for future treatment, the bottom line is that it is no clear-cut decision, and until we know more about the staging, there's no purpose in dithering about it. 

This afternoon, I spoke with Dr. Hendricks (who was on vacation in Florida) and summarized this info.  He said that he was certain the he had removed some muscle tissue, but that those might have been in the paraffin blocks, not the slides, and just the slides apparently had been sent to Hopkins.  He welcomed Schoenberg's observations and confirmations.  While Schoenberg was happy to do the second TURBT, he also seemed ok with Hendricks doing it.  

Thus, the plan is to stay the course:  have the second TURBT on 1/5/12, wait for the results, do more consulting, and decide where to go from there. 

In the meantime, thank you for your ongoing support, faith, prayer, and love.  Enjoy the holidays with your loved ones, and treasure each day!