Chemo Day 42 - third round of carpet bombing

Today was another long chemo day at the GW Cancer Clinic.  My platelets and white blood cell counts bounced back nicely from last week, and physiologically my body is ready for another round of poisoning.  Mentally, I'm tired of chemo and all of its side effects.  I'm halfway done, and just need to suck it up and get through it. 

I had a long conversation with my oncologist, Dr. Aragon-Ching, before the chemo started.  She explained that, after the last infusion on April 16, and the last Neulasta shot on April 17, I would wait for 3 or 4 weeks for all of the drugs to be completely out of my body before they do the next round of scans.  She said that the chemo drugs, as well as the Nulasta, can alter the bone marrow and other cellular readings and give inaccurate results.  So sometime in mid-May, I'll have a full-body PET scan, and an abdominal CT scan.  The radiologists at WRA, GW, and Hopkins all will read the scans and give me their interpretations.  (A thousand years ago they would have thrown chicken bones on the floor and given me their interpretations.)  She said that the scans are done at a 5mm level, so any distant metasteses that are smaller than that and not in the cros-section will be missed.  Apparently the scans are not all that useful -- to be picked up, a distant cancer has to have a bright flashing billboard saying "here I am!"  As a result, she expects the scans to be negative. 

Assuming the scans find no billboards, I'll have the radical cystoprostectomy (RC) and neobladder procedure scheduled, probably for early June.  I'm still leaning towards having Dr. Schoenberg at Hopkins doing it, but I intend to follow his suggestion to check on other doctors for second opinions.  This past weekend, I read a number of medical journal articles and abstracts about the Studer neobladder.  (For a detailed description and drawings of what this involves, see this PDF).  Most interesting to me was the reports in the articles that 20-30% of the patients who had surgery died within 5 years from the spreading of bladder cancer.  I am still sifting through the articles to parse out the details -- some patients had T1, others T2 (like me), or T3 or T4.  Some had neoadjuvant chemotherapy (like me), others did not.  Of those that had neoadjvant chemo, some had MVAC, others had GemCis (like me).  Also, there was wide variation in the ages of the patients -- older patients or those with co-morbidities were at greater risk of recurrence. 

I spoke with Dr. Aragon-Ching about these data.  She acknowledged that I was reading the reports correctly, and that, taken as a whole, up to one third of bladder cancer patents who have the diseased organs removed nonetheless have the cancer spread to other organs.  That spreading (obviously) occurs before the bladder and prostate are removed, but are not caught on any scans.  She added that, when the bladder cancer spreads to other organs, it is inevitabaly fatal.  Bladder cancer loves to spread to the liver and the lungs.  Additional chemo and radiation and maybe surgery can slow the progression, but all the doctors can do is play cancer whack-a-mole (my conclusion, not her words).  It's clear that, once that stuff is loose in the body, it's just a question of time. 

She also said that there is very little the doctors can do to predict whether I'll be one of those 1/3.  She said that more recent data suggests that younger patients (below age 60) with T2, GemCis neoadjuvant chemo, and RC, have the odds of distant metasteses drop to between 20-25%.  She said that the type of urine diversion makes zero difference to long-term prognosis (which makes sense, because the point of RC is removing the diseased bladder and the probably cancerous prostate; what you do thereafter had more to do with quality of life than cancer). 

She said that, one of the better predictors was that, after the bladder and prostate is removed, Hopkins will do a very careful and detailed pathological examination of the organs and lymph nodes to determine just how laced with cancer the bladder tissue is, whether the prostate is cancerous, and if so, how much, and the same questions for the lymph nodes.  She said that the more cancer found in that tissue, the higher the likelihood that the cancer has already spread, and vice-versa.  In answer to my question regarding long-term planning, she said I should continue to take a wait-and-see approach. 

I found this exchange to be helpful, if not a bit frustrating.  We expect doctors to give clear answers and firm predictions, but with this disease, there is so little that we can tell in advance.  I appreciated how she candidly admitted there was much that we didn't know, and that oncologists like her treat bladder cancer as a systemic disease that can't be detected.  To use a crude analogy, my chemotherapy is like carpet bombing the mountains of Afghanistan hoping to kill some terrorists, but mostly it is just bouncing mud.