3 years 6 months ago - 3 years 6 months ago#49450by Alan
Craig, you will beat this. I was in your shoes 7.5 years and just had my annual cystoscopy done yesterday. I learned in the early days and weeks-one day at a time. Love each day. Soon it was over with 6 BCG-my URO believes in 6 weeks on, then 6 off, then 6 more. I told myself 1/2 done and with each week time passing it was downhill. Fun? Not at all. The annual cystoscope yesterday, no fun. Painful? Not really, more uncomfortable. I don't dismiss BCG, it was burning and irritation and some have more adverse reactions. I told myself it will be over and not anywhere near as bad as chemo. The months passed and it is all at distant memory. I still remind myself each day is a gift, someday this or something will still get me but, that is all I can control. One day at a time! BTW, I am all clear!
That is life! Embrace it!
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.
Craig - let me just add that I was diagnosed with transcell carcinoma six weeks ago and after two transurethral resections, the tumor was removed with no evidence of any residual cancer; I start BCG in the next week or two myself. I am 64 so I know exactly how you felt - when first told I had a mass in my bladder, my reaction was "of all the organs that would do me in, my bladder was last on the list, behind my heart, stomach, liver...."
But the good news, as Sara Anne indicated, is that bladder cancer is indeed eminently treatable, you just have to stay on top of it. It is more like a chronic condition that with proper treatment is very unlikely to kill you.
Needless to say, I wish you the best of luck. Of course, if are only a few doses left of BCG owing to a shortage, I may have to arm wrestle you for them....but hmmmm, you would win that hands down, so I better start pumping iron NOW just to be ready lol!!
T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October
Sara Anne, thank you so much for your encouraging words. I had a talk with myself today and decided that I am not going to let this consume me, that I will fight this, but I have a life to live. Yes, my oncologist told me there would be another round of BCG after the 6. My wife and I are meeting with him tomorrow morning to discuss everything, when he called yesterday with the pathology report, I was so bowled over, I think I only heard half of what he said. I m so glad that I found this forum, a wealth of information and experiences.
3 years 6 months ago - 3 years 6 months ago#49440by sara.anne
Welcome to our club, Craig! I know you probably didn't want to join, but we are glad to share what we know.
BCG is very effective against CIS. There is a lot about BCG under the Forum topic "Non-Invasive" that you may find interesting if you have not read these posts. (Be aware that a lot of these posts from earlier in the year were written when there was a shortage of BCG, which has been somewhat relieved now so that some of this information no longer applies.)
While not fun, BCG is very do-able and it is great that we have it to fight CIS.
It is no where near as difficult as chemotherapy for other types of cancer. You will want to be sure that your urologist offers maintenance treatment as well as the first series, as this has been shown to increase the effectiveness significantly.
I went through the entire regimen, including maintenance, and have now been cancer-free for over 7 years! You will no doubt have a similar result.
It is terribly upsetting to be told that you have a diagnosis of cancer of any kind. I often sort of joke that I did not even know I had a bladder until I was diagnosed with bladder cancer. I remember feeling really upset and not knowing which way to turn. It took a while, but once I accepted the diagnosis and the fact that it was very likely treatable and curable, life settled down again.
Wishing you the best of luck
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
I was diagnosed with CIS, I start my BCG treatment on Monday. It is noninvasive, and of course I have been all over the internet, and reading how it is high grade and can become invasive and maybe spread to other areas. I am a usually calm person, but I am freaking out. I am a 63 year old male, and my heart goes out to those who have BC at a much younger age. My wife and I are very frightened, I am hoping that there are folks who can calm me down.