Long term outcomes

Chris,

I agree that your age adds another factor. I don't know what decision I would make if I was in your shoes. It was not an easy decision for me to have an RC. I did go a little on intuition. I felt in the back of my mind that having an RC now would be
my best chance at long term servival. As far as sexual function I can tell you that I am able to achieve a total erection post surgery, but not all men are as lucky. I had a very skilled surgeon, and so far it looks like my neobladdder is going to funtion as designed. A diagnoses of T1G3 puts a person in a difficult situation and I know exactly what you are going through. I wish you the best in whatever direction you take.

KC

Alyssa,

I'm not sure of the specifics of your tumor, but if you had a primary, solitary TaG2, less than 3 cm in diameter, and no co-contiminant CIS, then the EORTC risk tables would put your overall risk of recurrance at 46% over 5 years and overall risk of progression at less than 1%..

www.eortc.be/tools/bladdercalculator/default.htm

I'm making the assumption that your tumor was less than 3 cm, if it was bigger then the statistics change a bit.

These statistics are from the EROTC data from 2,600 patients - people with a similar diagnosis had a reoccurance nearly 50% of the time (over a 5 year period). I would imagine that not many of these people were 26 years old, so maybe what your Doctor is telling you is correct, but I would doubt he has had too many 26 year old bladder cancer patients to compare your case with either.

Chris,
" So, for the reason we don't appear to have any of these long term G3 survivors on the webcafe boards again must just be the nature of the board"

This is exactly what my Doctor told me the other day....

HI Chris

You seem very knowledgable. I was wondering if you or anyone else knew the risk of progression or reoccurence in a ta low grade (2 of 4) tumor. I am also very young with three small children. My urologist stated that he felt it would not come back. I also wondered if this type of tumor has any chance of metastasizing. I had a chest x-ray, blood work, and an IVP all were normal. I never had any type of cat scan though. It is very scary to be so young with this desease. I hope as time passes the worry will decrease.

Thanks,
Alyssa

KC,

Yes, I remember you were a bit anxious about your diagnosis. Glad you are recovering well. I do agree that having the bladder out would help alieve that worry/stress of progression/mets. With one single T1G3 tumor I guess I can hope its a fluke one time event, where if like in your case if multiple T1G3s are present upon diagnosis, it would seem to indicate that there was a more prevalent change in the bladder lining.

There is also the issue with age, being 35, even if I had a neobladder constructed, I really don't believe those things will last longer than 20-30 years before becoming problematic and requiring a replacement. Now at 54, if your neobladder lasts 30 years, thats probably around as long as you will need it. And of course impotency is something else I would rather not deal with at 35. If I were 55-60 I am sure it wouldn't bother me as much (or so my dad tells me )

I had a second opinion done at the UW Medical Center out here in Seattle this afternoon, where the chairman of the urology department Dr. Lange confirmed my original urologists statistics/EORTC statistics that I probably had about a 5-year 17% chance of progression and 45% chance of recurrance (after my initial course of BCG treatments) or less. He also indicated that he probably wouldn't perform maintenance in my case, as he did not believe the benefits were worth the trouble, pointing out that most people don't even complete the maintenance schedules, and soemtimes the BCG treatments themselves ruin the bladder.

Dr Lang also agreed with my observations in the 16 year EORTC bladder cancer risk graphs that after 5-10 years the risk graphs appear to flatten out, indicating most people making it to this point are in fact cured (although there will always be a few late recurrances/progressors). He indicated that the first couple years are the most important.

And most importantly, he did confirm that he has long term T1G3 survivors with their bladder intact 20+ years later, some were patients being treated prior to him being a doctor.

So, for the reason we don't appear to have any of these long term G3 survivors on the webcafe boards again must just be the nature of the board.. People diagnosed 7+ years ago (prior to Webcafe) who didn't get a bladder replacement or die, probably found their support network elsewhere, are now "cured" on yearly cystos not impacting their life on a daily basis. Seems weird, but maybe the nature of the board just draws people who need support for their cancer, i.e. people dealing with day-to-day urinary diversion problems, people with mets discussing treatment and newly diagnosed worriers. So, if my theory is correct we probably don't even have very many TaG1 20 year vetrans on the board, although I would expect more (but not that many) people with long-term neobladder diversions.

I guess that gives the perception to some of the newly diagnosed that you either end up with a urinary diversion or mets, when according to my consult with Dr. Lange and the EORTC statistics (among others), its obvious that there is probably a number of long term T1G3 surviors with intact bladders/cured.

Of course another part of me suspects both urologists colluding to feed me a rosy picture get me to stop worrying about dying.

Hi Chris,
As you already know you and I had similar diagnoses. Although I had two T1G3 tumors. You probably have also read my other posts and know that I chose to have a RC/w Neobladder. It was not an easy decision, but now that the Rc is over, the one thing that has improved is my stress level. I was really stressed wondering if cancer was going to, or already had spread. I found it hard to concentrate on day to day living. I feltmy cancer was a constant threat. My urologist was all for bladder preservation, but said he could not rule out RC. He said it was my decision and described it as a double edge sword. Going after bladder preservation may end in failure and death from BC and an RC could result in compications in the future. Although I am not as young as you, (I am 54) I feel I have many good years ahead. I will list my reasoning for opting for early RC. Please note that I am just stating my position. The decision you make has to be what you are comfortable with. It is true that some people who choose bladder presevation will live out there life with an intact bladder. The problem is that it comes down to odds and no one can acuratly predict the outcome. Here is my reasoning for choosing early RC

1) Grade 3 tumors pose a lethal threat life long.
2) The chanceof my cancer returning was high and I wou probably be facing an eventual RC anyway.
3) There was already a 10 or 20 per cent chance that a T1 G3 tumor had spread to the prostate or lymph nodes.
4) the majority of people with neobladders, or other diversions live a high quality life and do everything they did before sugery.
5) There is a high probability (25%) of getting tcc of the kidney or prostatic urealtheral cancer with bladder preservation.
6) Prostatic involvement in the future would jeapodize neobladder creation.
7) Complications due to urinary diversions can be corrected, cancer spread beyond the bladder is very often fatal.

I am now 5 weeks post RC and am already stating to get back to my normal life and the stress and worry about the cancer is gone. I wish you luck in the decision you make. It sounds like you are going on with bladder sparring and I support you on that decision and wish you the best. It is not easy living with this cancer and the choices that have to be made are unbeleivably dificult.

wishing you the best
KC