Newbie-34 year old malT1G3 w/cis...scared to death

Vin,

Yeah, interesting you and I had the same bad habit (snuff).  I never knew that the carcinogen's being absorbed into my lip would be filtered out by my kidneys and dropped right into my bladder!

The good thing is that you have a probable cause.  The way my doc put it, my chewing habit probably (about an 80% chance) caused my bladder cancer.  The first good thing about knowing the probable cause is that you can stop the destructive behavior, and there is a chance that if your not introducing any more carcinogens into your bladder and if they knock out all the bad mutated cancer cells with the BCG and TURB, that you could be cured.   The bad news is that you will never know for certain, but it is amazing what a couple of clear cystoscopies can do for your confidence.

I have heard different opinions as to whether quitting tobacco will lessen the risk of recurrance and progression.  I have read several studies though that show worsening disease with continued usage of tobacco products.  I have seen several statements that claim the bladder regenerates (after quitting) from the effects of tobacco carcinogens and that several years later your risk of continued bladder cancer recurrances/progression is much nearer to the general population.

But one thing that is painfully obvious is that no one has ever done much of a study coorelating chewing tobacco and bladder cancer.  The only warning on the cans of dip I ever saw were for gum disease! (should we sue? )

But there may be something to chewing tobacco and bladder cancer.  I believe that we may have ingested more carcinogens this way than smokers.  So maybe a can-a-day of carcinogen loaded chewing tobacco is a fast path to a T1G3 tumor (plus CIS in your case).

Nonetheless, you quit the chew cold turkey, this is one of the most important things you can do for yourself in my opinion (besides getting a good TURB and following up with BCG treatments), I think with the CIS you should probably look into a maintenance course of BCG as well. Not trying to minimize the statistical prognosis of your cancer presentation (T1G3 + CIS sucks), but I would wait and see what a full 6-week course of BCG, plus maybe a second course as well, before I made any rash decisions about bladder removal.

Good luck and drop me an e-mail any time if you have any questions.

PS. There was even a study that drinking beer lessened the chance of developing bladder cancer.  This is a study that I like to put a lot of weight in and have been drinking lots of beer hoping it will help cure me

Vin
Yep. When I finally went for my surgery I realised that reading all these experiences and being up on all the info about the surgery is very different to actually going through it yourself!! But if you do choose that route it's a well trodden path nowadays and you will come through the other side. I personally found it hard to keep a level head at times in hospital but as soon as I got home things rapidly improved.

tim

Chris,
I really hope things continue to go well for you. I'm hoping to follow in your footsteps attitude-wise and cancer-wise. I was reading one of your posts that mentioned you were Kodiak's best customer for 20 years. Well, I was Copenhagen's. Backstabbing habit, eh?
I never thought I'd be one of those "won't happen to me" statistics.
Like you I have been 100% cured of any desire to even look at another tobacco product.
I'm sure I'll be talking to you.
Thanks,
-Vin

Tim,
Thanks for the words of encouragement. That is definitely great info. I hope I can keep all that in mind through this ordeal. I finding it increasingly difficult to be positive. I'm sure I'll be keeping in touch
Thanks again,
-Vin

vin
I'm 5.5 weeks out from my cystectomy and although it was hard work for a few weeks it is getting easier and nowhere near as bad as I expected. I'm 43 so kind of have age on my side. Anyway, the dread I had prior to the op has been replaced with a kind of guarded optimism. And, fundamentally, I still feel like me. Which I also didn't expect. I don't feel like I have a disability just a management issue.

Sexually, though my surgeon did the "nerve sparing" surgery that preserves the ability to attain an erection, it's early to tell whether it's worked as the body needs time to recover. I'm hopeful though as I feel the odd stirring down there! The op can damage the nerves that control erection but not the abaility of the penis to fill with blood. meaning there are options even if the nerve sparing doesn't work. as my oncology nurse said "if it couldn't fill with blood any more then it would drop off"! I start a course of viagra next week so mail me if you want a progress report. As chris says, there's no guarantees, but it's certainly not a no-hoper.

my pre-op pathology was pretty similar to yours. TaG3 tumour with CIS that kept recurring in spite of BCG (i did BCG for a year and a half). I did the research and decided that since it looked like I'd have this op anyway at some point in the future, I may as well have it when the chances of it being curative were at their best. It was one of the scariest, toughest decisions of my life and immediately after the op I had the odd regret. But now I'm on the road to recovery, the sun is shining and I'm getting more and more active. My diet's the same as it was, I have the odd beer. Again, as above, there are stories of people who have continued with the BCG and eventually achieved a favourable result it just wasn't the way I personally chose to go. Knowing that I have a really outstanding surgeon here also helped with my decision.

Downsides for me right now are mainly nightime wetness. I have the daytime about 90% of the way there and it really feels very manageable as long as I don't do any gymnastics. I wear a pad but often don't need it and it's an improving situation. The nightime IS improving and hopefully will follow the daytime. Frankly if that wasn't an issue I'd be pretty much back to my old self. That said, there are a lot of products out there to help and you just have to find the right ones for you. The keywords here are "patience" and "adaptability". Also, when I balance it out against the life I was living before with the horrible BCG and the increasingly regular cystoscopies and the recurrencies and worry, it really doesn't seem like a bad option at all. I had been treated for BC for 14 years prior to this but its only in the last 2 that the grade ahad increased (from a 2) and the CIS had started to make regular appearances. I'm astonished at how close to regular peeing that peeing with a neobladder feels.

I hope things work out for you, Vin. Ask me anything anytime.

Vin,

Don't panic, let the BCG run its course and see where you stand at that point.  Don't worry too much about an outcome that may not happen.  A fellow that helped me deal with my T1G3 diagnosis (9 months ago - clean since) is:

blcwebcafe.org/stories/young_ph.asp

Paul had a similar diagnosis (at ~36 years old) to you (T1G3 w/ CIS) and I believe after an intial failure has been clean for 2-3 years, pop him an e-mail, I'm sure he would be glad to consult you.

Also don't wig out on the impotence aspect, plenty of guys have gone for the nerve-sparing surgury when getting a neobladder and have been able to have continued erections. No guarantee, but definitely hope in that area.

A lot of us have been in your shoes, I was pretty messed up for about 4-5 months, eventually you don't let it bother you too much and get on with your life... just takes time.  Its hard to give up your illusion of invincibility/immortality you have had since you were a kid.

blcforum.com/cgi-bin/forum/YaBB.pl?num=1142294620

Good luck tomorrow!