Wednesday, April 25, 2012

Mets Day 14 - to cut or not to cut?

Several weeks ago I traded emails with Dr. Ashish Kamat at MD Anderson, seeking his input re micropapillary bladder cancer.  He was the lead author on an article in Cancer from 2007 titled, "Micropapillary bladder cancer: a review of the University of Texas M. D. Anderson Cancer Center experience with 100 consecutive patients" (link here).  I was inquiring whether he had availability to do the surgery earlier than May 14, if Dr. Schoenberg could not advance the date.  Dr. Kamat's response was troubling:

I am currently overseas, so briefly: if your tumor has truly progressed to proven metastatic disease while on standard chemotherapy, I would NOT recommend surgery at this. Rather, I would recommend additional, alternate chemotherapy regimens asap in an attempt to control what is most likely a systemic event at this time. (This is a conundrum with MPBC histology). If you wish, you can call our New Patient access line and request a consultation with our medical oncology team.

This information is opposite of what Drs. Aragon-Ching and Schoenberg told me last week.  I have forwarded Dr. Kamat's email to both of them; Dr. Aragon-Ching suggested that I consult with MD Anderson to find more about the "additional, alternate chemotherapy regimens".  Dr. Schoenberg responded: 

unable to move up the surgery because the hospital is moving to the new building and this has closed some of the OR's
with regard to Dr. Kamat's advice, I have no evidence that I can lean on that proves that you have metastatic disease. That said, it is always possible that you have positive lymph nodes and these will only be discovered at the time of surgery. I realize that you have been given conflicting information about this tumor's behavior and I am sorry if this has produced confusion. Our current practice is to recommend surgery for patients in your current situation irrespective to cell type (except in cases of small cell cancer which you do not have).
Perhaps a face-to-face consult with Dr. Kamat would be useful to you in helping you resolve your plan of action.
Please let me know if I can help facilitate this should you wish to make that trip.
Best,
-m


I have spoken with MD Anderson  and gotten the wheels rolling for a consultation. 

This conflicting information further reinforces my belief that medicine is an art laced with a series of assumptions and judgment calls, not a science where data is plugged in and the same answer is produced every time.  It's also frustrating to go through as a patient.  It's just a matter of life and death.  No big deal, right? 

Note also that Hopkins can't get an earlier date for the surgery.  So it will be on May 14, unless something changes.  My gut feeling is to proceed with the surgery, then pretty quickly get more chemo using a protocol to be determined.

(Knuckles whiten as I hold on tighter to this unending roller coaster.)

1 comment:

  1. I hear your frustration. Dr. Schoenberg offered to help arrange a consult with Dr. Kamat. Is Skype a possible vehicle for a consult if your record can be sent to Dr. Kamat wherever he is?
    Your research, self-advocacy and persistence are your best tools right now. Doctors are not God, they only think they are; so try to remember who really has you in Good Hands.

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