Low Grade TCC

3/20/07 – Well it’s been over a year since I logged on to the webcafe. Just thought I’d update… Last scope was August 2006 and the doc said don’t come back for a YEAR! I’m feeling great, eating right and exercising 3-4 times a week.

1/16/2006 – It’s been a busy 6 months. I’ve had two scopes (Oct 05 & today) and both were clear! Doc says don’t come back for six months – Yippee!

I’ve got one full year since reoccurance, which was my first goal after quitting smoking. Now, who knows what I can accomplish. I’ve even considered trying for Lance Armstrong’s "Tour of Hope" Cancer benefit bike race across America. Hey, I’ve always been a bit crazy. I feel better than I have in years and I’m hopeful that I can put cancer behind me and move on with my life.

8/1/2005 – I had my 3-Month Cystoscopy July 11 and the Doctor gave me another all clear! He used the flexible "Scope on a Rope" this time. BIG IMPROVEMENT over the rigid ramrod variety!!

The good news freed me up to ride my bike on RAGBRAI and everything just fell in line for me to go. As I rode the final few miles of my seven day, 485 mile trek across Iowa, I told myself that Cancer Patients do not ride RAGBRAI… Cancer Survivors, however, do. It was less a statement of any athletic ability, and more an exclaimation of my desire to continue to enjoy and live life to the fullest.

3/28/2005 – Three-month Poke-n-Peek. All clear! I will be researching opinions on rigid versus flexible scopes… told the Doc I wanted to try the flexible one next time. He said OK. We’ll see if he’s serious come July. Do Doctors require special training to use a flexible scope? If flexible is more comfortable for the patient, what would be the rationale for continuing the use of the rigid if he has both available? Hmm.

Late 2004 – Original Posting
Cherry Kool-Aid??!!!
When you look into the urinal and that’s your first thought, there’s probably something not quite right.

I rush to the doctor for a consultation after work. Three days later the results of a urine culture rule out an infection. My family doctor didn’t even want to really see me, said Go to urologist, Go directly to urologist… do not pass Go, do not collect $200.00 – His exact words were “I’m paid to be a chicken”.

Urologist Appointment: Did the full battery of tests including urinalysis, cytology and IVP. I was lucky, as urologist said we caught the cancer early. A 3 CM tumor had taken up residence in my bladder. Well, I certainly had not invited it to stay! What’s up? I ride a bicycle 1000 miles a year (half on a week long ride called RAGBRAI), go to gym a few times a week and since my cholesterol jumped above 200 a few years back, I even try to watch what I eat.

Oh, and I smoked about a pack a day… DING, DING, DING! Now I’m pissed off! How come nobody warned me specifically about the high risk of bladder cancer in white men who smoke? I knew I was at risk for a low-birth weight baby, LUNG cancer & cardiac problems. Nobody said anything about my bladder. Sheesh!

Cystoscopy at outpatient center at local hospital. Knock me out please. Wake up and yes, there’s a tumor and it has to be removed. More outpatient surgery a week later for a TURBT… snip, snip. Bye bye, my nasty little uninvited guest. Finally experienced something significantly uncomfortable from this deal: Can you say “One immediate instillation of Mitomycin C following surgery"? This, after I observed three IV bags drain into my arm. How about “A bladder has a certain capacity and you generally should not exceed it.” Where, exactly did they think those IV fluids were going? I spent two hours writhing on a hospital bed feeling like my bladder would explode. Later I find out, “Oh, you just needed to ask the nurse to release a bit.”

Three weeks later I begin the Great BCG Adventure: First treatment – Ho Hum. Second – little burning & urgency. Third – Moderate burning & urgency, didn’t quite make the two hours. Fourth – Lots of burning & urgency and some blood. Fifth – Extreme burning & urgency, held for about 1-1/2 hours. Sixth and last treatment – NASTY… burning & urgency, lots of blood with chunks, up all night because of inability to void much. My major symptom with BCG was an extremely annoyed prostate. It felt like it swelled up to twice it’s original size and cut off half the nerves to my lower body. My posterior and upper thighs ACHED for two months during and after BCG. Likely as a result of my insulted prostate, I typically woke two or three times throughout the night to void.

Two Cystoscopy appointments showed the all clear. Uncomfortable procedure (done in Dr. Office) but very quick which made it manageable. A third check in Dec 2004 showed the uninvited guest was back. A week later, back to outpatient surgery to evict the damn squatter. Thankfully, no Mitomycin this time. Tumor was much smaller than the original (about size of a match head) but definitely related in stage & grade.

So, it’s a year since my original diagnosis, and I’m a little smarter now. Not gonna let no high-fallutin urologist with 8 years of education and 20 years specializing in urology outwit me. I’d done my research (Thanks WebCafe) and was armed with all the information I needed to get the best treatment. During phone consultation about post-surgery treatment with my BCG nurse, I listened for an opening and attacked, “What about the new combination therapy with BCG and Interferon”. I expected an argument, but instead heard “I’ll check with the Doctor and call back." She called back and said “Great idea, we’ll start next week”.

I just did four weeks of the BCG/Interferon. Although symptoms during treatment were about the same as BCG alone, my prostate didn’t object nearly as strongly and the lingering effects wore off much quicker. Thumbs up on combo therapy from this warrior.

It’s been about two months since the previous round of treatments. I’m feeling back to normal, occasionally sleeping straight through the night, but most of the time waking up once to void. I consume about a gallon of water, juice and green tea every day, so that may have something to do with it. Talk about being properly hydrated!

I struggle with the enemy in my mind sometimes, but am mostly OK with being a BC “Warrior”. I have a beautiful family and I will fight every step of the way to enjoy 20 or 30 more years with them. I’m grateful I have a low grade/stage cancer with a relatively high five-year survival rate. It could have been worse. Hell, I practically asked for cancer by smoking all those years. Early on after my diagnosis, the though occurred to me; “Well Jerry, SOMEONE’S got to have cancer – why not you? It could have been some kid instead of you. It could have been one of your own children!”

I have my three-month Cystoscopy next week. Wish me luck. I’ll update then.


gilmeyer Author