Bladder Cancer Awareness - April 30, 2011

Next Saturday, May 7, 2011, will be Bladder Cancer Awareness Day in the United States. One primary activity, sponsored by the Bladder Cancer Advocacy Network (BCAN), will be a "Walk for Bladder Cancer - Leading the way to a cure." The purposes of the day and the walk are simple and clear - to raise "awareness" about bladder cancer in the community and to raise money for BCAN. The purpose of BCAN is equally simple and clear: to foster communication, education, and still more "awareness" about bladder cancer. And perhaps more importantly "to raise funds for bladder cancer research and education."

So what is all this talk of awareness? For myself, awareness is a binomial distribution. Before I was diagnosed with Bladder Cancer I was blissfully unaware of its existence - my awareness was zero. Now, of course, I am aware of it literally every time I need to urinate, every time I eat the foods I should (and avoid ones I shouldn't), every time I take a supplement or vitamin, and every time I look at this blog. My awareness is pretty pervasive - near 100%. And even though Bladder Cancer is the #4 or #5 most prevalent form of cancer (depending on who is counting from day to day), many people are indeed fully unaware as I formerly was.

Contrast my impression above with a survey of more than 1600 people conducted last May in the UK. Half of those surveyed had no idea what the most common cause of bladder cancer might be. A quarter had no idea about the warning signs for the disease, with 18% guessing that the most common cause of bladder cancer was drinking too much alcohol. Only 5% correctly cited smoking and only 1% mentioned using chemicals at work - the factors which actually are main causes of bladder cancer. Industries involving dye, rubber, aluminum and leather are linked to an increased risk of bladder cancer. And the most common symptom or warning sign for bladder cancer is blood in the urine, but only half of those surveyed knew about this.

I digested the information and the messages for quite a while. Now that I am painfully aware of Bladder Cancer, what has changed? My lifestyle certainly is healthier now. But if I did not have it and was equally aware, what difference would it have made? I am pretty sure that without the threat of imminent and painful death, I would have changed nothing in my lifestyle. So that is why I often tell folks that bladder cancer may be the best thing that ever happened to me. Certainly it made my cousin Rick put down cigarettes forever - something he would have told you was not even possible. So awareness makes sense for those that have the affliction, but what sense does it make for those that don't? Some other factor must be hidden beneath all this awareness talk.

Both the UK survey and the BCAN literature point to the same conclusion - one that seems to be a default conclusion for nearly every problem today in western society. Awareness must be raised so that (government) funding can be increased to address the underlying problems. The equation is simple: low awareness = low government priority = proportionally lower government funding. I think it pays to be honest. While education and information and communication are cited as the goals, these noble factors are really the means to an end - to increase awareness and increase proportional government funding. Private funding increases are also welcome, but we all know the real money these days comes from the government. And that's what the awareness is all about.

Please don't think I am trying to rain on anybody's parade here. Given all the odious things that governments overspend money on these days, doing something that might benefit me directly seems like a good trade. I simply think that the goal should be more clearly stated. And given the state of most government deficits these days, spending more on anything at all may well be questionable. Still as common as it is, bladder cancer is not really difficult to understand, diagnose, or treat. As such, many doctors (like my second opinion guy Dr. X) find themselves drawn to fields such as liver or testicular cancer - as they present unsolved problems and intellectual challenges not found in boring stuff like bladder cancer. So guys like Dr. Lamm who pioneered the BCG treatment continue to dabble and experiment with new ideas, but younger physicians tend to focus on more elegant problems. I suppose raising awareness and associated funding might serve as a carrot to draw some of these bright minds into new research areas. And to the degree that funding is moved from something awful, it could be a net gain.

As you can tell, I remain a bit ambivalent about it all. Not because my danger period is past - I shall have scopes once per year for LIFE to remind me, plus BCG treatments until the year 2020 (if all goes well). Just because it seems like such a futile and hopeless game to chase after government money for your favorite causes. But if awareness is your thing, next Saturday is your day. Advertise, walk, donate, pray, write blogs, or whatever. And you may as well reach out to someone you love and give their bladder a gentle squeeze. Trust me - that will get a lot of attention and awareness going!


Anonymous said...

Thanks for the post. At 2.5 years into the BC thing, and the usual TURBT/BCGs(16)/Cystos, I relate well to all your posts. I have not been extraordinary about my diet, but what the heck, at 72 y.o and a yearly trip to France to get gout, the diet thing should have happened at least age 50. By the way (I usually refuse to use the internet-email contractions), I quit smoking at age 44, and the BC happened 25 years later. I have no doubt however, that the smoking was the cause.


Rick Carroll said...

Let me just say that awareness certainly can and does make a difference. The difference that I have personally experienced has meant a stage zero to one diagnosis rather than a more advanced stage of BC. For those of you that are aware, a more advanced stage means a more involved treatment program and most probably a less desirable prognosis. Simply by taking action to seek medical attention when I was lucky to notice a single instance of blood in my urine saved my life. It was only because I had some family history that I took it seriously at the time. However, I had know idea that smoking was a major cause. I have been a very vocal advocate of quitting smoking since my diagnosis last January. I am convinced that smoking is/was the cause of my BC. I see this coming Bladder Cancer Awareness Day as an opportunity to place a megaphone to my mouth to shout it out louder.
Cousin Rick

Joe Hendricks said...

Thanks for posting this! In my case, I never smoked, was never around industrial/automotive chemicals, and have no family history of any cancer. Same for my wife - she is the only one we know of in her family with cancer. Go figure.

My first post-BCG cysto was clear. Based on latest research, I've got 3 independent variables going against me: recurrence, bladder neck involvement and multiple tumors(14 this last time).

Anyone else have that many tumors?

I'm really grateful to be able to compare notes with you all!