One year ago today I was starting my first neoadjuvant chemotherapy session. Neoadjuvant means chemo before having surgery to cut out the cancer. Neoadjuvant chemo is not a cure, but is a protective measure to reduce the odds that the cancer that should have been removed via TURBT will grow and spread.
That first day of my neoadjuvant chemo took more than 7 hours. I remember blogging in real time about it, and being impatient because the GW cancer center was taking so long to poison me. I did three complete GemCis rounds of chemo, then had a series of scans in mid-April that showed that the chemo had failed. The bladder tumor that had been removed in two TURBT's on December 1, 2011 and January 5, 2012 had aggressively returned in less than 4 months, larger and more extensive than before.
With the benefit of 20/20 hindsight, because my cancer was the most aggressive form, with micropapillary features and tendrils, I now believe that I should not have had neoadjuvant chemotherapy. Instead, I should have had my bladder and prostate removed in January 2012. The decision to proceed with neoadjuvant chemo was made by relying on the recommendations of three different sets of doctors - those at GW, Johns Hopkins, and Harvard, as well as my review of the literature that suggested that patients with bladder cancer who had neoadjuvant chemo had a 15-20% better chance of long-term survival than those who did not. What the studies did not show, and what I feel the doctors did not discuss adequately with me, was whether those statistics were true for those with micropapillary carcinomas. It was not until I was deep into my third round of chemo that I was alerted by a fellow bladder cancer survivor to the grim facts of the very high mortality rate of patients with micropapillary bladder cancer and who waited to have the bladder removed.
The scans in December 2011 did not suggest that my cancer had metastatized through the bladder wall and into my lymph nodes. The scans in April 2012 suggested that it had, and post-pathology surgery confirmed that 12 nodes outside of the bladder were positive. If I had the surgery in January 2012, instead of hoping for the prophylactic effect of the neoadjuvant chemo, then it is far more likely that the cancer would have been contained to my bladder, and completely removed with surgery. I might still be having the same issues with the nighttime incontinence, but the risk of metastatic cancer recurrence would have been much lower.
I write this not out of any bitterness or anger, but instead for insight to future readers who are going through the same thing. I believed that the decision to start neoadjuvant chemo was correct at the time, based upon what I was being told and had read. Generally speaking, neoadjuvant chemo may well be the right treatment for many bladder cancer patients. But future patients should consider the following:
What is the staging? The higher the staging, the more serious the cancer is, and the faster you want to move. T2 or higher means that the bladder must go. T1, maybe. Ta and CIS, probably not.
Is the tumor localized in only one place, or are there multiple tumors? (I had nearly a dozen.) The more tumors, then worse it is. A bladder with multiple tumors is hopelessly compromised. Get over any thought of holding onto that diseased organ, and get rid of it. The sooner, the better. By contrast, it may be possible to save a bladder with only a single low-grade tumor.
Des the cancer have micropapillary features, or tendrils, suggesting that it is highly aggressive? If so, moving quickly to get it out might be best. Note than many pathologists and even some urologic oncologists are not trained to identify micropapillary features, as they occur in less than 2% of all bladder cancers. Asking for a second opinion of the TURBT slides is a good idea.
What are your co-morbidities or other complications? If you are a candidate for RCP (radical cystoprostatectomy, the surgery that removes the bladder and prostate), and it is indicated, then don't delay. A delay of only a few months can be the difference between keeping the cancer localized in the organ, and thereby having a high chance of recovery, or having the cancer spread, and dramatically reducing the odds of survival.
Good luck!
It sounds like you've learned a lot in the last year. How are you feeling otherwise?
ReplyDeleteThis is a remarkable post.
ReplyDeleteFor those moving through this type of cancer, read Ken's words with care. Get surgery first. Get it now. Do not wait. Do not do chemo if there is any chance that your tumors are what a layman might call "hyper-aggressive."
I remember when Ken first read the French study that indicated 100% mortality if surgery was not performed first.
It is a massive set back to realize your doctors are not as well versed in treatment as they should be. And his doctors are some of the best in the world.
We were consoled that the French study was very small. The stats are skewed when the study is small. The extrapolations have much too large a margin of error. A similar US study employing a much larger population brought some measure of hope. But only some.
One of the things I most admire about my brother is his clear-eyed view of reality. He does not worry much about what might have been (he leaves that to me) he simply accepts reality, embraces it, and moves forward bravely with a grace that is astonishing. How I love him and admire his capacity.
If there is one additional take-away for any who may read this blog, whether cancer patient or not, it may be to emulate that trait.
It is a fine thing to live bravely and honestly and still have hope. It is perhaps the essence of faith. And when hope and faith are alive, love always follows, for love always looks outward seeking some way to serve others.
Ken's post is an example of that kind of service.
If we emulate it the world is better for it.
I am just reading your blog now and this is very helpful. My father is currently in the same sitation, having waited months between neoadjuvant chemo and the radical cystectomy. He was t2g3. I wish he had moved faster but it’s now in the lymph nodes. Very sad.
ReplyDelete