I was 52 in Nov 2006 when I first experienced visible blood in my urine. Family Dr. was quick to pass it off as an infection. A few days of antibiotics, and it was gone. No other symptoms. Interestingly, it was the 1st time I had a digital for the prostrate, and apparently it was fine.
Fast fwd. to Aug. 4th 2007. Our 2 week vacation plan was bought and paid for, my two daughters and my wife looking forward to the excursion. Then 8 hours before the 4:30AM flight , I had blood in the urine again. This time it was so red it was nearly black. Okay, should I do the guy thing and ignore it, or…. Well as I raced passed my wife who was outside with the neighbor explaining what needed tending to in the garden, etc., my only thoughts were how black the blood appeared to me as I raced to the local clinic. My Dr. grounded me on the spot and had booked me with the Urologist on Aug. 7th just 3 days later. Looking back, that was the toughest time that I had to deal with, was that 3 day wait. Imagine my girls (17 & 13) deeply upset at the loss of their "special" vacation. My wife was more concerned with the obvious, bless her. Cysto revealed a papillary growth. I was advised that the pathology report would be more specific in 2-3 weeks. First time for cysto, first time for catheter, first time experiencing the agonizing pain of a catheter for 5 days (post cysto)because I had quit voiding and it was backing up int my kidneys.
Path rpt. indicates T1G3 tumour. Scheduled for TUR Sep. 6th and until then, had a battery of tests (CT, ultrasound, Xray, & bone density). TUR was successful according to the urologist (Dr. Tse). 5 day live-in catheter, another experience that someone should write a book about (catheters for dummies???)
Urologist referred me to oncologist. Had 15 minute meeting with oncologist and subsequently BCG (1/wk for 6 wks) treatment began mid Oct. 2007. Overall, BCG treatments were fabulous (can you see my tongue in cheek) compared with the other invasive experiences thus far. Tolerated the BCG fairly well, along with the common side effects, except alot of night sweats. Only had to have one treatment (4th)delayed for a week. Also popped Oncovite for the duration of BCG round one. Darn they taste good compared to other vitamins. Broke the bank buying pomegrante juice as well as green tea, and gallons of h20 as part of my regular daily intake (instead of 10-15 coffees per day).
Cysto undertaken Dec, 18th. Wow, 1 week before Christmas. I was more concerned with how the potential negative news might affect my daughters and wife, than I was concerned for myself. However, praise be, it turned out OK with no visible sign of BC. At this point the urologist advises that I am scheduled for a Cysto every 3 mos. for the next 10 years. That seemed unusual, perhaps, I thought, the urologist knows that given the BC was high grade, with a high probability of re-occurance, and given my age (now 53) that it would have to be removed anyhow before I'm subjected to all 40 cysto's. Well, of course that's just my twisted logic playing out since very few patients, including myself have access to the urologist to simply discuss matters (like treatments, monitoring plans, etc.)
Jan. 9th, 2008 the 1st treatment of my maintenance round of BCG (1/wk for 6 wks). The same day, the urologist's nurse called, and advised that my PSA test came back high, and that the urologist wants to do a prostrate biopsy. Nasty telephone call, I'm thinking – too surrealistic. Perhaps the PSA level (4.6 up from 2.0 in December) is simply elevated from BCG induced prostatitis? But heck, I'm no specialist I think to myself as the uro nurse advises that she's never heard of this before. Thank the heavens, that the prostrate biopsy will be delayed until after this BCG maintenance round, if I can get through it.
The 1st maintenance installation resulted in some moderately excessive reactions. The typical blood in the urine, passing, tissue, fever (99-100.1F), chills, night sweats again (thought I got over that part just before the Dec. cysto) voiding pain, frequency, and the weird affliction -> arthritis type of pain in my right knee, which I've never experienced before, and I've got some pretty strong knees.
Second treatment, the oncologist decided to postpone the treatment for one week. Second treatment went fine until after that 2 hour period of turning every 15. Then I experienced the same symptoms as the 1st treatment on Jan 9th, except, these complications were much more severe (save for the fever which didn't break 100F this time). Although the blood in urine was gone by the second day, I was still passing a large amount of tissue, actually into the third day. Wow, I really learned what frequency meant – every 2-3 minutes. Felt like parking myself on the great white for the day, except the pain, especially after voiding was still very intense and I just had to move around.
Last week was supposed to be my third installation, however, the oncologist was sick, and the oncology nurse decided to postpone treatment again for a week, and do a urine culture, which came back negative. My next treatment is Feb. 13th, and I am starting to feel a little shell shocked, or apprehensive about more treatments (except my head wants to rule my heart and go for it anyway). The strange thing is that the arthritis type pain has reappeared in my knee today (only hurts to walk up the stairs), and more importantly, there is a constant dull ache over the bladder area that isn't going away, just seems to linger. It just persists, and doesn't cause me any difficulty voiding, but does wake me up occasionally at night, when I notice that I'm involved in another round of night sweats. My guess is that the oncologist will postpone the treatment for another week….meaning I'll just have to ride the wave.
Now if you haven't guessed it, I'll be honest with you that having BC wasn't as significant as I thought it would be, at least for me personally. That's not to say that I wasn't initially scared stiff, but once you've got it, either you fight it, or…. Day at a time works great for me. But the real coping medicine for me has been this website, with the stories, advice, the questions, the dialogue, etc. It really is like an extended family for me. The insidious aspect of my BC experience is how everyday family life is changed, the major impact on my daughters and son (he's not living at home anymore, but has been there all the way to help me out), the worry that I see my wife going through, and then, to top it off the possibility of prostrate cancer in the sights of an 80% re-occurance rate of the BC.
Let me top off this sundae, with a cherry! My wife is a cancer survivor! I'm a cancer survivor (so far). And riding the wave, since last August (2007) seems to be the only way to cope and hope.
Best regards to all of you, my BC friends!!!!