Living with Bladder Cancer

I was diagnosed with bladder cancer 15 years ago when I was only 47 years old. It was found almost accidentally when my internist sent me for a sonogram because I was complaining of heavy periods. What showed up was a small tumor. I could hardly believe my ears when she told me. I had the tumor surgically removed and the urologist told me it was superficial and required only follow up exams for 5 years. (By the way, I was a heavy smoker and I guess that’s why I got this disease.) Anyway, after 4 years I moved and while I did find another urologist his personality was so sour, and since I was sure I was cured, I stopped going for checkups.

Well, you guessed it–4 years later and 10 years after the first occurance, I saw blood in my urine. Again, I lucked out. It was superficial and again I only had to go for cystos every 3 mos.

Lo and behold, we moved again a year ago — this time to another state which meant I lost my health insurance. I probably don’t have to tell you how many times I was turned down by insurers before I found a very high deductible plan that would take me. The first thing I did was find a urologist

I can remember lying on the table and looking at the monitor attached to the cysto camera. I was dumb-founded by what I saw. There were two mushroom shaped growths. It had only been 2 years. How could this be happening?

Amazingly they were again superficial. I am now undergoing BCG treatments. I had a round of 6 then a 3 month break, a round of 3, a 3 month break, another round of 3. This protocol will continue forever. It’s not a bit uncomfortable and a whole lot better than losing my bladder.

Most of the time I feel just plain lucky. Occasionally I get scared that I’m doomed to get an aggressive tumor. I hate living with this. It makes me feel vulnerable and somehow damaged.

I’m 62 now and want to live a lot longer. I’m determined to keep on top of this and I figure if I see the urologist every 3 months, he can always catch this thing while it’s managable. In fact, the first time I saw him he said “these bladder tumors are nothing more than a nuisance when you catch them when they’re small, but as serious as a heart attack if they are left untreated for too long.”

So, if you’ve been diagnosed with BC, I guess I would advise you to make your urologist your best friend. Make sure you get yourself into his office every 3 months - even if you have to pay for the exam yourself (as I do until I meet the $5000 deductible). He/she can save your life.