Yeah, in many ways I can consider myself lucky. I just hope that I'm one of those really lucky ones where it never comes back. God knows I have been through so much over the last few years (lost my sister to lung cancer just 8 months ago, never smoked, along with other issues). I tell my wife that I should play the lottery...the man upstairs owes me one... if not the lottery, them I'll be happy with no reoccurrence...that will be my personal lottery!
Thanks gain and I hope your doing well these days!
5 years 6 months ago - 5 years 6 months ago#46518by carls
Thanks for your input.
I'm pretty comfortable with my doctors suggestion as to following the suggested protocol. I think if things get worse for me I would definitely seek out a second opinion. I live in NJ and have access to some of the best cancer hospitals in the world (Memorial Sloan Kettering in NYC, Fox Chase in Philly, etc).
I know I can never ignore this and it will be part of me for the rest of my life... I'm just hoping that I can someday feel good enough about my future prognosis to put it way back in my head instead of what it is now, clearly front and center!
Thanks again and I hope you're doing fine these days.
5 years 6 months ago - 5 years 6 months ago#46517by carls
Thanks for your reply. I sure hope you're doing Ok these days.
It's funny how one day you can feel invincible and the very next you're facing your mortality head on. It sure makes you realize how precious and short life is and to NEVER take a day for granted... It has been a real eye opener for me and I know I see things a bit differently these days. As unpleasant as they are, I can assure you I will be following up with my 3 month cystos.
I tend to agree with your assessment of bladder 2.2. My Uro did not poo-poo it nor did he support it.. he stated he just wanted to provide me with whatever is out there relating to bladder health. As I did my research, the only trials that provided some positive evidence was funded by the manufacturer...Naturally I'm a bit skeptical... and at $100/bottle it really looks like a bunch of MD's trying to be entrepreneurial. More power to them, but I think I'll compromise and just start taking a daily multivitamin.. a lot cheaper, most likely safer and perhaps just as effective.
Thanks again for you input, I'll keep everyone informed as time goes by.
5 years 6 months ago - 5 years 6 months ago#46513by CatherineH
Hello Carl... I want to join the others in welcoming you to our forum. As Alan said, we are not doctors. We have just collectively learned a lot about this hateful disease the hard way... through our own diagnoses and sharing of that information.
My profile was much like yours as far as good health, active, taking no meds, non-smoker, etc. when I was diagnosed nearly 5 years ago. I was viewed as "the healthy" one among my other 5 siblings. I, and most of us here, can relate to your sense of shock, worry, and at times just outright fear after getting that news.
The good news of your situation is that is is Ta, low grade, and very, very treatable. Yes, recurrences are likely, especially with the Ta/T1 tumors, which is why the 3-month cystos are so important, as well as having a doctor you are confident in for your treatment and follow ups.
Please ask any questions you want here... nothing is off limits as far as bc goes. I am glad you found us.
P.S. As far as Bladder 2.2, I'm not familiar with it but I don't know of any definite study that says any supplement helps to prevent bc or recurrences. I do take a multivitamin (and other supplements) because I think it helps with overall health. The ingredient list of Bladder 2.2 is almost identical to my multivitamin, except for the fillers listed under other ingredients in 2.2. My opinion is that this is a rather expensive product aimed at BC patients but is not necessarily better than what is available otherwise. Just my 2cents...
Best wishes... Catherine
Forum Moderator Team
TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Last edit: 5 years 6 months ago by CatherineH.
The following user(s) said Thank You: carol58, carls
Glad you found our site but, also sorry you have "joined" it. Yes, the good news is on low grade often the URO will say "watch and wait" which is the normal protocol. Low grade is "usually" just a nuisance with a good probability of reoccurrence. Even if it was high grade, the protocol is a cysto every 3 months for two years, if they are clean, then every 6 months for two years then yearly-assuming no reoccurrences. None of us are doctors so stay close your URO-sounds like he/she is following what the "norm" is.
Many of us will also encourage a second opinion at a major hospital or teaching hospital for peace of mind.
Good luck, peruse the web site as there is a lot of information and come back with any questions, someone will have a comment.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.