Suggestion those with superficial non invasive

thats also a good point you make WS. I had ultimately a G3 with CIS and opted for an elective cystectomy despite the fact that I still had some way to run with the BCG. sometimes I read the posts where people have continued down that road and triumphed and it often gives me a "hmmmm" moment. at the end of the day Im happy with what I chose but reading about others who'd taken the more radical approach gave me the courage to take that approach myself. and, for me, that approach has led to greater peace of mind than Ive had for years and, in my specific case, I believe it has given me the best survival advantage. this is a really good thread by the way Rosie.

tim

I have to admit I've been thinking about bladder cancer more often since I joined this forum even though I'm cancer free for almost 7 years and have never had a recurrence... but then I don't know if all the things I've read and keep reading put BLC on my mind more, or if it's that I had a horrible experience with a month of pain from a urethral stricture that was essentially dismissed by my urologist leading me to find a new urologist and this forum. Well the second episode of month-long pain 8 months later and multiple procedures in the past year haven't helped either.
The truth is, a fear of recurrence has always been with me at every cystoscopy. I can't believe how little I knew about BLC before I joined this forum, how blindly I followed my urologist's advice, and how lucky I've been considering my treatment did not match today's protocols.
So maybe I'm a little more frightened about what could have happened that I didn't know about... but I'm also more prepared for recurrences, more invasive disease, and treatment options should I need them.
I'm still pleased to point out to newbies that even with TaG3 and CIS it's possible to never have a recurrence as I've experienced, but that vigilance through regular follow-up remains a necessity. After my December cysto with retrograde pyelogram I hope to move to annual follow up... but we'll just have to see how much trouble my urethral stricture gives me. Smetimes there's little opportunity to forget that something momentous happened. No matter how well you do, cancer does change your life forever.

Dan, thanks for sending me calm vibrations and Holly for the blessings. Joe, there is double meaning in your post but I too am sorry that you are in the invasive 20% but you did not add to my panic attack. I brought it on myself by reading to quote Zach "the parts (or posts) that made me feel worse (and tense)". Tim, you give us the correct perspective. I agree completely with Zach and now apply a very similiar limit on my viewing, listening and reading. I noticed each morning when my husband and I turned on the morning news we kept being "punched" by sensational and upsetting stories. What a terrible way to start the day. We no longer turn on the news first thing in the morning. I feel it is better to fill our mind and spirit with uplifting people and surroundings. Not that we hide out but lets have the weight on the more positive things in life rather than the threatening or upsetting. Those of us with a different type of bladder cancer than the others need to be aware of the differences and not over caution nor overtreat. Rosie

Rosie,

I've thought this over a bit, and have decided to make a comment.

I guess I just plain do not agree with your statement, though I believe that I know where it is coming from.

I personally do not want to cut myself off from the valiant testaments of all the bladder cancer warriors on this site. There is so much courage here.

However, to each his own, and I do think I understand why you made this statement.

Your BC friend,
Rosemary

Rosie, not only do I agree with you 100 percent, I'll take it a step further.

Since our lives are--in my opinion--partly created by what we think about and what we focus on, after I was diagnosed and the enormity of the situation dawned on me, I quit reading most of the local news and severely curtailed what news I read on the internet and watch on television.

Most local news is composed of three things. Who got stabbed, what burned down, and who got arrested. And in my little town in southern California, there's a fourth--what illegal aliens got caught doing. Oh, and Britney Spears got photographed without underwear. Can't forget that.

Do I really benefit by knowing about this? Does it affect me in any way besides making me angry. No. Just as reading international news about dogs and cats being thrown from a bridge in Puerto Rico has no real bearing on my life. Except to make me feel tense, furious, and helpless.

I don't read every post on here, just as I don't read every post on every cancer forum. We only have so much time and so much we can pay attention to. What we do watch and focus on influences our lives, how we interact with our loved ones, and... dare I say it.... our health.

We wouldn't let someone come into our home and dump garbage in the middle of our floor, yet we fill our minds with much worse every night. By choice.

Well, I choose to opt out. I'll watch--and read--items that matter to me and are things that I can do something about. And instead of watching breaking news about a gang fight at the mall, I'll play with the dogs. I'll brush the cat. Or I'll do some laundry.

Zach

Afterthought--Of course I read things that have an impact on me and our business--I haven't quit *all* the news. Just the parts that make me feel worse and that play no part in my life or home.

After afterthought--My wife read this thread, and when she got to the part I wrote about doing the laundry, she said, "well, why don't you go do some instead of just talking about it?" ;D

Hi Rosie,

I also think it's great for you to focus your attention on selective posts - perspective is great. And the statistics certainly indicate that most folks with low grade cancer will very likely not have to deal with progression. That's such a relief.

But as another non-invasive blc patient who's had a cystectomy, Tim's point of view is one that I share.

For me, understanding the various possible outcomes of my particular blc (good and not so good) had a calming effect as it gave clarity as I sorted through my treatment options. I look at blc as a continuum of possible stages and grades - all with their own probabilities. The categories that we and doctors establish can be useful, but don't always reflect reality.

This forum's title 'Superficial Non-Invasive Bladder Cancer' covers a wide variety of cancers, from low-grade papillary to high-grade T1 and CIS, and as such it can certainly be confusing/worrisome to have it all under one forum. There are pros and cons.

I am sending calming vibrations your way. <g>

Dan