I've always found tremendous safety in numbers. I mean real numbers and I'm talking business management. Understanding the relationship of one set of numbers with another set is key to creating metrics to manage by. Even in the bar business. Seriously, I've been ridiculed by plenty of bar people who say that's not how this business is done. If you go into Hayley's bar in downtown Mobile, AL - a famous and probably my favorite dive bar ever - etched forever into one of the tables there is a caricature of me saying "The liquor cost is too high!" I get the joke and I know it was you Brent Turner! There is a relationship of not only liquor cost to sales but also door charges to sales, sales per person per hour, credit vs. cash, etc, etc, etc. If one knows his/her numbers you don't even have to be present to understand what is going on.. Liquor cost too low, not pouring fair/accurate shots. Sales per person per hour to low, probably not serving customers timely, and the ratio of door charges to sales to high, might be customers aren't sticking around as long as they usually do. These and other metrics just highlight there is an issue worth exploring to ensure you are delivering the product your customers expect. Bar people say, that's not really necessary in this business; you are over-analyzing. I don't respond, but if I did it would probably be something like, "Hey kid, that attitude is why so many bars fail; you can't recognize a problem before its way too late". You got to know your numbers.
BY THE NUMBERS:
So I guess its not surprising that in my case, when faced with life or death decisions, I ran to the safety of numbers. And the numbers were not good. But if I understood the numbers I could ensure that the treatment I was being offered was the "Gold Standard" and more importantly understand the chances and length of survival. I just wanted to know. When I first presented with symptoms, readers of my blog will recall, my first biopsy in December 2014 was declared benign. It was later re-analyzed by the absolutely world class University of Alabama - Birmingham National Cancer Institute hospital laboratory and the true results would be classified as Stage 1, High Grade, Non-invasive. If accurately diagnosed in December 2014 my chances of long-term survival would have been 95%. By May 2015, when I was accurately diagnosed with cancer, the cancer had progressed to Stage 2, Muscle Invasive, High Grade, TCC. Now my odds of survival had diminished to between 49% to 60%. The lower number was if the tumor was still contained in the bladder but had grown through the muscle layer and touched the fatty layer of the bladder wall and that no one could tell until they had the bladder on the laboratory table. But one also had to factor in that survival also greatly diminished if treatment was delayed greater than 90 days. Damn!
The first thing I did was make the first appointment I could at UAB Urology/Oncology. Data showed the best outcomes are at NCI centers with physicians who specialize in Urology Cancer. Any Urologist simply would not do. I made the decision to delay my treatment 10 days to go there. I agonized over that one; but the numbers were clear. I met with an outstanding physician who specialized in Kidney issues but was well versed in bladder cancer as well. But his partner specialized in bladder cancer; he wrote papers about bladder cancer. He performed the surgery I would need, literally hundreds of times versus tens of times for the first doctor. I was upfront with the doctor when I told him I wanted to start treatment with him, but I would really hope he would refer me to his partner for the actual surgery. That was hard to do, this guy was SMART, but this is my life and I was already behind the 8 ball in my opinion. And that's what happened.
I went through Chemo in the hope that it would kill the cancer cells that may or may not be floating around my body, living in lymph nodes, and certainly the actual tumor itself. On bad days I would imagine the little bastards laughing at me. I noticed my bladder function improve with the first dose of chemo. To me, that was a good sign. But in the end, it all comes down to the final staging based on the pathologists report of the tissue removed during surgery. That is an anxious waiting game.
THE SURGERY
The surgery lasted 9.5 hours. Well, it lasted 9.5 hours for Janice and the doctors; for me it lasted 1 minute. They removed my bladder, prostate, cut a section of my small intestine, and every lymph node they could reach across my pelvic area up to the point where the abdominal aorta splits. The first thing I realized when I awoke was I wasn't in pain. I was surprised. I have another post just below about the blow by blow of the surgery for those who may find this blog on Google and are about to go through the same procedure. I was released in 4 days versus the 6-10 I was told to expect. It was a pretty easy recovery for what I had done. Now we waited for the pathology results. Ten long, excruciating days.
FINAL PATHOLOGY RESULTS
They ultimately removed 52 lymph nodes. That is an extraordinary number; really the most I had heard of. That is called an Extended Lymphandectomy; and that's important. Some surgeons remove between 7-24; with 20-30 being about average. One factor is that I have, er had, a lot of lymph nodes, and the other is my doctor realized the latest data shows a slight survival benefit the more nodes are removed and in this business, every benefit counts. He had a team of residents with him and they must have taken turns to last that long. The idea is, if indeed the cancer has left the bladder, real bad news, there is a slight chance they may still just be in the lymph nodes and not an organ like the liver, kidney, lungs, brain or bones. Slight, but still a chance.
Again, I knew the numbers. Doesn't really matter what your stage was prior to surgery but its the final staging that matters the most. Prognosis is easy then. Its all right there on the table to slice and dice. 45 percent of the time the stage of the cancer is increased in the final pathology. 25% of the time the stage is decreased. About a third of the time the Stage is the same as the original diagnosis. Assuming I stayed at Stage 2 and NO lymph nodes were positive out of the 52, my 2 year survival rate was 69%. If I was upstaged to 3 and no positive nodes, 2 year survival odds was 55% to 60%. If one node was positive at Stage 2, survival odds were 49% and if 2 or more nodes were positive, 2 year survival fell to 20%. So we waited for 10 long days.
The first thing the doctor said was, all nodes were clean. Janice and I just clenched our hands tighter because that gave us a chance. After all the bad news, finally some good news! Then he told me the stage: pTcisN0M0 - p stands for pathology (final staging), T is for original Tumor, N is for how many positive nodes, and M stands for metastasize; 1 for yes, 0 for no.
I didn't know those numbers. Honestly I didn't even know where that T stage fell but it had to be less than 1??? I didn't calculate going all the way back to less than 1; how often does that happen? Actually, less than 10% of the time. It turns out the chemo regimen totally kicked my high grade, aggressive cancer cells ass; totally wiped them out. The cis stands for "carcinoma in situ" or "pre-cancer" cells and that was all there was left. I was calculating in my head as the doctor was speaking and he said my survival rate was about 90-95%; period. Not 2 year survival; period! This, really, was shocking. My head was spinning. Bad news, upon bad news, and now THIS? Could it still kill me? For the stray cancer cell to kill me now it has to be a Cancer Stem Cell (CSC), they make up a small percentage of the overall cancer cells. Those cells would have to dodge all 52 lymph nodes whose function it is to grab them, suck them in, and attack them (that's why cancer is found in lymph nodes first), all the while surviving against a chemo attack that was able to kill all its sister cells. That's a tall order! Can it happen, yes, that's why its not 100% certain, but I like my 90-95% odds. Certainly mentally I'm going about my business of assuming I beat this thing.
THEY FOUND ANOTHER CANCER?
Yes, kind of. When they examined my prostate they determined I had an unrelated Stage 2 tumor in my left lobe with a gleason score of 3+3=6. Fact is, there is a debate now if they should even call this cancer as it hardly ever metastasizes with that gleason score and retrospectively they find a very large percentage of males who underwent autopsies but who died of unrelated causes also have this "cancer" That's why they no longer recommend PSA tests for men because it causes over-diagnosis and treatment. Prostate cancer is still dangerous of course, but it requires a gleason score of 7-8; but really, usually 9-10 - which means highly aggressive. Gleason score of 6 they won't usually even treat anymore.
THE ROAD FROM HERE
Well, for the first time in 6 months I have no treatment plans for cancer. My next appointment is in December for scans to ensure the cancer hasn't come back, and I'll have those scans every 3 months for the next 2 years. If I make it 2 years then it will be something else that kills me. Right now I am battling a bad UTI for the last 4 days; a not uncommon complication. With my weakened immune system I need to be careful for the next 3 months or so. I've been loaded up with antibiotics orally and intravenously, but I'm beginning to feel a little better. Hopefully, this blows over soon and I'm back to how I was right after surgery. Peace and blessings for everyone that prayed for Janice and I as we went through this; this has been, and in some ways continues to be, a trial of a lifetime.
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