35 years old, dipped Kodiak snuff (tobacco) for ~20 years – probably the cause.
So, I am learning quickly.. a week and a half ago March 1st, 2006, just started urinating blood out of the blue at work (Gross Hematuria), went to my overworked HMO GP and they diagnosed me with a probable UTI and sent me away with a prescription for antibiotics and told me to check back in 2 weeks. So, Monday March 4th, 2006 I went back to the GP and said my Gross Hematuria (with clotting) was still real bad and that the antibiotics were not working, they made an appointment the same day for me to get checked out by a Urologist. I had my first cystoscopy the following day (3/5/06), which was relatively traumatic, but didn’t last too long. Actually it hurt more urinating for a day or so afterwards than the actual procedure. Doc says the tumor looks superficial and figures it is a TaG1.. no big deal. So, on 3/6/06 I had second cystoscopy and transurethral resection of the bladder (TURB) and the pathologist report indicates on 3/10/06 that the tumor was actually a T1 with characteristics of a G2-3. We are going to talk this Wednesday 3/15/06 about treatment options, I think BCG.
So, my journey is just beginning. I am lucky I have excellent medical coverage for whatever may happen.
Good thing is that as of 3/01/06 I [b]completely lost [/b]all desire to ever use another tobacco product.
3/15/2006 – Dr. says tumor was a T1G3 and we plan on 6 weeks of BCG starting 3/24. From what I understood, a [b]single T1G3, less than 3 cm, w/o CIS[/b], had a 5 year risk of re-currance of ~50% and risk of progression 17-25% w/ BCG treatment, so with BCG maintenance my risk of progression should be even further limited. (I want to believe!).
BCG treatments don’t sound real fun, a form of the TB virus.. You get to carry it around in your bladder for 2 hours a week and have to use bleach in the toilet when you void for safety precaution! Heh heh, I want to walk into the restroom at work with a jug of bleach ;D
3/24/2006 – Ahh the catheterization and instillation of the BCG wasn’t nearly as bad as I thought it was going to be, took about 5 minutes.. this was pretty much a non-event. I went and saw a movie later that night. Made sure I poured bleach in the toilet to kill off the BCG I pissed out. These 6 treatments I’m scheduled for look like they are going to be a breeze.
3/31/2006 – Second BCG treatment, could be just coincidence but seem to feel a little woosey (headache, dizziness, slight fever) the day after my first and second BCG treatments.
4/2/2006 – All the sudden experiencing gross hematuria symptoms again (blood/clots) in urine, happened on and off during the day, then stopped. Doc said if it continued to come in the following day… it stopped though. Reading up more, I didn’t realize the BCG effects were cumulative, so I guess I should expect more pronounced side-effects as the treatments continue?? Sucks, got me feeling sorry for myself again/worrying about bad outcomes. I really want to have a positive outlook, but just can’t keep thinking about the "what ifs" that this thing could take a turn for the worse and a tumor re-currance could invade or worse spread, or that maybe the doc didn’t actually get all of the tumor during the TURB and its still in there invading away. I don’t want to lose my bladder/prostrate and lose my sex life, I don’t want to die young or early.. I want to live until I’m 80 or 90. I want to see my children grow up and my grandchildren grow up. Cancer sucks.
4/18/2006 – Third and Fourth BCG treatments were a breeze, no side effects at all after #3, have a little bit of pain urinating after treatment #4, but not bad… only two more treatments to go!
4/30/2006 – Finished the last BCG (sixth) treatment, the nurse must have messed up my urethra, felt like my penis was on fire all day Saturday, worse when I urinated. Saturday night was able to get to my bottle of pyridium (sp?) which stopped all pain.
Going in to debate with my doctor in a couple days whether BCG maintenance is warranted – He doesn’t believe in/practice BCG maintenance, but everything I read about Dr. Lamm’s protocol sounds like its the right choice. I want to know if Dr. Lamm is a quak or has an agenda or the studies are actually inconclusive??? For some reason it seems half the Docs buy into the maintenance and the other half don’t?
5/08/2006 – Talked to my uro yesterday and although he doesn’t have much faith in it, he has agreed to follow Dr. Lamm’s BCG maintenance schedule with me, figures it probably won’t hurt me so why not.. Have my first poke & peek June 12th.
5/16/2006 – I’ve been getting paranoid about my condition, last week had some swelling/pain in my right ankle, convinced myself (sort of) that it was bone mets, went to my new GP and had an X-ray, looks fine. Spit up a little blood last night, kind of freaked out over that as well…although it cleared up immediately. It seems I am getting to be a bit of a hypochondriac. Also decided to drink mainly bottled watter from now on. My Dad thinks I need to join a support group.
6/12/2006 – Had my 3 month cystoscopy today, Didn’t hurt like my first one. In fact the Doctor indicated that the scope’s diameter is smaller than the catheters they used for the BCG instillations…You know the old saying, the first time hurts the worst :). Everything looked like it should according to my urologist. No visual evidence of disease. My urologist is recommending that I come in for a re-Turb and bladder mapping and also go out for a second opinion on treatment course.. he said these recommendations were for my peace of mind only, as from his experienced eyes everything was looking like it should. He also suggested that maybe I should look into some anti-anxiety medications becuse he senses I have a strong fear-of-death that may be consuming my life. The last few days have been a roller-coaster of emotions, I have not been a very happy person.
OMG, I had forgotton how painful urinating is after a cysto! Much worse than the BCG catheterizations. I took some pyridium, hoping that will ease the pain. Hope this doesn’t last very long, fortunately, its only painful while urinating, once its done I can feel pretty good until the next urination.
6/13/2006 – Ahhh, relief I can urinate without the razor blades again..
6/16/2006 – Decided to bag the re-turb and bladder mapping. My urologist said he would do it if I wanted but didn’t recommend it. I am however going to get a second opinion on 6/27. My urologist suggested a couple of doctors over at the University of Washington MC.. I’m secretly dreaming about their pathologist downgrading my tumor from a T1G3 to a TaG2 or something 🙂 Could happen? Right?
Now that I have had my first clear cystoscopy, I am feeling more confident I am going to live a few more years, but now my thoughts are about what the real probabilities that I’ll be cancer free or even alive 20, 30, or 40 years from now? I’ve seen 5, 10 and even 15 year studies, but most of the progression or recurrance charts never actually flatline.. So I am wondering what happens to a 35 year old with a T1G3 tumor 35 years later? Does this cancer come back with a vengeance 20 years after its first diagnosed? Since most people seem to get it at around 60-80 years old, all they have to do is make it 10 years then they die of some other old age disease. If I go 5 years without a recurrance or progression can I truley say I am a survivor and that I am probably cured? Does the BCG wear off in 5-10-15 years, do you eventually become resistant to BCG? I think most doctors have only been using it since the 90’s. Too many questions, wish I could go back to a time when I figured I would live forever (or at least until I was 75). Guess I understand why some choose cystectomies, to try and remove the fear of death.