I don't say any of this to scare you, but just to emphasize the need for follow up. Never become complacent. As others have alluded to, grade (how cancerous) and stage (how invasive) is very important. Many people have recurrences of low grade tumors. They are a nuisance and just have to be removed to be treated... But they must be taken seriously, because low grade cancers can recur as higher grade cancers, and low grade cancers can invade. The key to long survival is to try to treat before the disease becomes invasive.
I had high grade, noninvasive cancer, but after my first treatment remained cancer free for 10 years. Then I had 2 recurrences of CIS in 2 years and just a few months after my last treatment a recurrence of high grade tumors with invasion of the lamina propria but not the muscularis. I knew it was time to get my bladder out. It's been 13 years, and they haven't been easy for a variety of reasons, but I'm here, working full time and enjoying my family.
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...
I know firsthand how terrifying this is...you explained it perfectly when ya said, we feel good..yet we have this serious illness..it becomes very easy to 'forget' about it, that is until it rears its head once more! Oh, one more thing...I, like you, feel that knowlege is power...although with bladder cancer I have found that it may not be entirely true...at least in some respects, there can be 'too much' knowlege...on one hand, we must trust in our doctor's decisions and on the other, we want to educate ourselves to enable us to take an active part in that decision making process!! I found some pretty scarey stuff which in reality could easily 'be me'...BUT, finally the reality that each case is unique has taken hold...for now, I am going to cope with each recurrence as a 'new' one, doing whatever it takes to be cancer free...if only for a while...AND let go of the worry...until there's something definate to worry about...in MY case...until then, life is GOOD!!! Keep us posted...My treatments begin again on the 28th of this month...
Hi, Sorry to hear it has come back that is a bummer. What stage and grade was the first time. I had five tumors taken out in 2006 and mine has come back at times also.I was stage Ta and grade 2. The times it has come back we have always caught it at a very early time ,so we just take it out again.
It all depends on what stage and grade it was and is now. Don't get discourged
this is a type of cancer that can come back. That's why they keep a close eye on us so they can catch it soon. It is a drag and nerve racking to get it out again, but listen to your Dr and then you can make a decision as to what to do next. My brother had it taken out a couple of times and then nothing for ten years.
Let us know if you have any questions. Rocky