by Ace Hoffman, bladder cancer survivor
October 19th, 2007
Right now, there are about 500,000 bladder cancer SURVIVORS in the United States. I'm one of them. Every year, more than 60,000 people -- mostly men -- are diagnosed with the disease in America. For about 20% of these people, by the time they are operated on, the cancer will have ALREADY gone through the wall of the bladder. I'm NOT one of those. Of those whose cancer has gone through the bladder wall, about 20% will die within five years. Like many cancers, the key to survival of bladder cancer is EARLY DETECTION. And the main CLUE is blood in your urine. Unfortunately, many things can cause blood in your urine. And unfortunately, CT-SCANs and MRIs are not very good at detecting cancer in the urinary system. And unfortunately, the other way to find bladder cancer -- a visual inspection by going up the urethra into the bladder with a camera -- can be INCREDIBLY PAINFUL, so people avoid it. I avoided it for six months. A friend avoided it for 18 months, and it killed him. (I didn't know it was bladder cancer that had killed him until after my own experience. Who WANTS to talk about this?) When I saw the blood in my urine, my immediate thought was, "Gee, blood, but no pain. THAT can't last!" I figured it was a bladder infection, which is usually very painful. I went to my doctor that day. There were a lot of "excuses" why it was probably nothing serious. I had just moved a lot of boxes the day before, after not exercising properly for a few months while working on a "big project" so perhaps I strained a muscle or something. I had let myself get dehydrated so that I wouldn't have to get out of line at the recycling center where I was going that morning, which was probably very fortunate,. I might not have noticed the blood, except for the fact that there wasn't a lot of urine to dilute it. Bladder cancer doesn't ALWAYS show itself with blood in the urine or the blood may not be enough to see. Fortunately, I had visible symptoms. First, my doctor put me on Cipro, a drug for curing bladder infections. "But why do you think it's an infection when there's no pain when I pee, just blood?" I asked. "Because you're pretty young (then 50) to have bladder cancer, and the visual inspection is pretty traumatic" was the reply. At that point, it was: Doctor 0, Grim Reaper 1. If the cancer invades the bladder wall, you have to have a cystectomy -- removal of the bladder. Then you either get a pouch to hold your urine, which you empty periodically, or, sometimes, the surgeon can make an internal pouch out of a piece of your intestine. If the cancer invades the bladder wall and gets out into the rest of your body, the Grim Reaper is probably going to win. In my case, it did NOT invade the bladder wall. They know this because when they remove the cancer, then they scrape off another layer of your bladder and test that for cancer, too. Mine came back negative. There's a moral here, of course: DON'T WAIT. Bladder cancer, when caught in the early stages, is nearly 100% curable. But the percentages plummet the longer you wait, which brings me to a side issue: The medical system MAKES YOU WAIT. I'm absolutely certain this is due in large part not only to the shortage of doctors, but to the screwed-up medical insurance system we have in America, where efficiency, efficiency, efficiency is all that matters (and that won't change one iota with socialized medicine, except maybe to get worse). If you have blood in your urine, you can expect to wait SIX WEEKS at a minimum, and sometimes a lot longer, to get an appointment for the initial internal inspection (called a cystoscopy). Then, even if the doctor finds cancer in your bladder, you might have to wait weeks for surgery. During these waits, the cancer can and sometimes DOES invade your bladder wall. And that can mean it's curtains for you. Insurance companies expect doctors to perform a certain number of procedures each week. For the doctor to have a contract with an the insurance company, they have to be able to show that they have an efficient office where money is not "wasted." But the only way to prevent an ebb and flow of patients is to schedule things way in advance! So six weeks is typical for many procedures. They tell you over and over that "EARLY DETECTION" is the key to preventing cancer deaths -- but then the insurance companies don't do their part! (I hope this letter causes someone to rethink this situation.) The cystoscopy might not be too painful -- I've heard it might not even hurt. A local anesthesia is applied, but if the prostate is pinching your urethra, the pain can be tremendous as the doctor pushes the flexible scope past it. Mine was very painful, but I'm told it gets easier the second, third, fourth, fifth, tenth time... After the visual inspection, there might be a fairly significant amount of blood in your urine, as well as a lot of pain during urination. DRINK PLENTY OF FLUIDS anyway --because the more you drink, the faster it heals. I must have peed 20 times in the first 20 hours after the inspection. The pain went way down after the doctor gave me a Flomax (that's a brand name), which made urination much easier. I only needed one single pill. By the next morning I could pee okay again -- painfully, but with good flow. Bladder cancer was confirmed on Tuesday, and that Friday I was operated on. Three weeks after the operation I was back on my mountainbike. Before we knew it was cancer, one person had suggested it was the bumping and thumping on the bike which caused the blood. Don't believe it! I've been riding my bike for more than 40 years, 15 of them off-road over rough terrain, and it never caused blood in my urine, even when I banged up my coccyx and broke my collarbone. I went over the handlebars, and when I landed I broke my collarbone in two places, and the bike apparently whacked me between the legs. I didn't notice the coccyx pain until I started riding again, and it took years to clear up. In fact, nearly ten years later, I still can't sit on hard surfaces for long, without getting a backache about two days later. People will suggest it's kidney stones -- my father would often have blood in his urine whenever he passed kidney stones. Don't assume that either! Get it looked at. It could save your life. Early detection is the ONLY CURE for bladder cancer. If you don't get it removed soon enough, it WILL kill you. The #1 known cause of bladder cancer is tobacco smoke. Except for the possibility that 2nd-hand tobacco smoke was involved, this was not the cause of my bladder cancer -- but 2nd-hand smoke is a perfectly real possibility, from time spent in smokey bars in my youth, or in smokey restaurants before California went "smoke free," to neighbor's smoke drifting into my house (which it still does from time to time), to passing smokers in public and breathing their foul, carcinogenic air. A study of Seventh-Day Adventists who avoided meat, poultry, and fish found they had less than half the risk of bladder cancer, compared to those who ate these foods three or more times per week. (One of my grandmothers and her mother were vegetarian Seventh Day Adventists. My grandmother made the best meatloaf in the world, and I only found out later it didn't actually have any meat in it!) I gave up nearly all meat and poultry about 12 years ago, and most fish, too. Becoming 99% vegetarian never seemed to affect my mountainbiking strength, although lots of people told me it would. None of them were vegetarians, though. In about six weeks I'll have my first post-operative inspection of my bladder. I'll update this web page soon after, to let you know how the inspection went and what they found. The previous inspection, though painful, was very brief because the doctor immediately saw what he needed to see, to know he needed to operate on me. So next time, hopefully, he'll have to spend a lot longer in there, checking things out, and finding NOTHING. Wish me luck. Thanks for reading. Watch out for blood in your urine -- it might be a dozen relatively minor things that can be fixed with a pill, or even ignored entirely. But it might be a sign of big trouble, and if it is, the sooner you have it taken care of, the better your chances of SURVIVAL. Don't die because of an unnecessary delay!
The author is a computer programmer.
How to handle those inspections:
(This next portion was written in November, 2010, after about a dozen "inspections".) Relaxing is the key. One learns to do that. I usually try to come in with a variety of things I want to say to the doctor, hopefully all good news, such as "no changes in urinary flow, no pain when urinating, NO BLOOD..." but also maybe a light-hearted (clean!) joke or two, and I always try to remember to thank him for saving my life -- though I don't always succeed.
One time, I concentrated a little too hard on what I was saying as the doctor started to enter, trying to ignore what was happening... and forgot to relax! That one hurt a bit extra. But none of them ever hurt like that first time. So once you've been through it once, if it came out good, that's great, but if you have to go through the inspections again (and again, annually for the rest of your life) don't worry, they DO get easier!
The doctor will probably offer you various medications if you have too much trouble urinating afterwards -- either for pain or because you can't control it. One medication turns the urine blue, as I recall. Your Doctor will probably recommend that you stay away from acidic fruit drinks such as orange juice, as well as alcohol. The Doctor may suggest antibiotics as a routine thing every time you are inspected. But I have found that cranberry juice works just fine... I have not had an infection after about a dozen inspections since the operation. I drink about a dozen cups of cranberry tea (without sugar) during the days around the inspection and I try to have a cup or two every day all the time now. It is generally accepted (including by my urologist) that cranberry can improve bladder health and I've found it to be sufficient. If it increases the sting a little, so what? The sting isn't the important thing, it's getting the "urge to go" to settle down afterwards -- which generally takes about half a day for me, although the first couple of times it took more like a day or even two or three days. Fortunately, I generally work out of the home and going to the bathroom frequently isn't too much of a problem. Will it be for you? Well, I have just one word: Depends....