What exactly does this mean?

Hi Dan and Zach,

That Pennys catalog thing was way tooo funny!
I do not regret my RC either and I have become quite fond of my neo I do not regret having made sure I got what I needed when I did.
Holly

Dan, the next time you're feeling nostalgic about the good old days, you might enjoy seeing the fashions from this 1977 JCPenny catalog.

I don't regret my RC either. Not for a second. I feel better and healthier now than I did a year ago, and my lack of my original bladder is so inconsequential in the big scheme of things.

Tim..."thinking space".....great term. So many of us don't have that time and its extremely difficult to line up your few remaining brain cells to actually assimilate and process the information of "invasive" and "cystectomy" and WHAT..lose my bladder....? Research done quickly.....Research very scary....making good decisions so paramount at this point. Why i advocate so strongly the second opinion from a major cancer center and finding that surgeon who can do this surgery blindfolded...well you know what i mean!!
Pat

Yes, very similar situations, Tim, except you had those G2 and CIS recurrences - I had none, fortunately, which I partly attribute (kinda) to a 2nd TURBT shortly after my first one (the docs thought it was recurrent blc - but it wasn't). Who knows.

My RC was one year after my initial blc diagnosis, and while on the one hand I wish I had had a cystectomy sooner, on the other hand I'm glad I had a dozen BCG treatments, even though the side effects were horrible on the last few (I did like the idea of my immune system being enhanced by BCG).

My sense is that for every cautious doc advocating aggresive treatment (RC), there are 50 docs on the other side. Why? Because there are relatively few urologic surgeons who do RC, most are only qualified to do TURBTs, prescribe BCG... It's like that old adage, if one's tool is a hammer, then every problem presents itself as a nail.

I also have absolutely no regrets about my RC. It's funny, there are so many things in life that I'd like a 'do over', a chance to do something again. But not this. The thought of cancer returning somewhere in my urinary tract is still there, but the thought is quite remote. My peace of mind is an order of magnitiude greater than before my RC, when I was worrying about recurrence and progression, was my blc understaged, would I need chemo, why didn't my first urologic surgeon use mitomycin C after my TURBTs... I was driving myself crazy.

I guess I believe that if one uses statistics and long-term outcomes of patient survival as a primary (though not the only) criteria to judge the 'rightness' or 'wrongness' of a decision to go the bladder-sparing or cystectomy route, then there is a right decision for those with T1G3 + CIS - and the right decision is cystectomy. But there are clearly other criteria to base this decision on, so as we all know, what is right for one of us is not necessarily right for someone else.

I'm yakking too much, time to make some coffee...

I think we were in a similar situation Dan. The G3 + CIS combo is an incredibly hard situation to call. It's damned if you do and damned if you don't. And for every very cautious doc you can find one that backs the conservative approach. it's very confusing. Ultimately I decided on a bladder sparing regimen but, after everything I'd read, gave myself a fairly strict limit - not as strict as your docs actually. I think I had a G2 recurrence, very small and the thing that swayed me towards the radical route was a teeny bit of CIS 3 months later. I was also lucky, like you by the sounds of it, to have a very frank medical team. But I don't regret taking the initial sparing route at all. I just wasn't ready for the surgery the year before. It's freaky situation anyway but I was much more prepared after some thinking space. I've never looked back and I feel my life is a lot better now. But you're absoloutely right about there being no right or wrong decisions. Just decisions you feel comfortable with.

tim

Hi Ceri,
Understaging does not result from lack of skill of the doctor or pathologist, it is not a misdiagnosis. Here is a quote from USC/Norris (and Dr. Stein is their top guy):

"Despite the best clinical efforts, even with advanced histopathologic evaluations and imaging techniques (CT, MRI), significant clinical staging errors occur. Errors ranging from 34% to 62% have been reported in several large studies."

BCG (maintenance therapy) does reduce (not prevent) recurrence and progression rates, so I would suggest that your husband's bladder-sparing approach include:

- continuing BCG maintenance
- use FISH in addition to cytology
- find an institution that does UV light cystoscopy as it detects cancer better than visible light cystoscopy

The reason I post this stuff is not to worry you or your husband or to say that his approach is not right (there is no right decision), it's just that your husband's diagnosis of T1G3 + CIS is a dangerous combination (one that I had). When I asked Dr. Stein what he would do if he had the same cancer as me, he said that he would undergo cystectmy before a recurrence. His recommendation (which is supported by several other papers that I had read) for patients with high grade cancer is as follows:

"It is my recommendation that patients that radical cystectomy be considered for patients with... T1 tumors associated with CIS...". One other thing to consider is the number of lymph nodes removed, especially important is one has muscle-invasive blc (which your husband's tests indicate that he does NOT have).

It can be a difficult decision what to do for T1G3 and CIS patients, especially when tests show no evidence of disease (I don't use the phrase 'all clear' as that is misleading). Dr. Stein's recommendation is not the 'right' choice, but another alternative.

Good luck!!!

Dan