Noninvasive Grade 3?

17 years 9 months ago #771 by Rosemary
Replied by Rosemary on topic Noninvasive Grade 3?
Hey Jim and Eric...

I really understand what you are trying to figure out... And you have a very nice way of putting things...

I actually forgot some people...my very old friend's brother...she said the doctor took a tumor out of his bladder ten years ago, and told him it was the largest tumor he had ever seen...I don't think the guy even took treatments, but it hasn't returned for 10 years now..

My co-worker's husband had it 4 yrs ago, did not take treatments, continued to smoke and it returned 3 yrs later...

I think it is just the vigilance that gets to me...it might be less worrisome, just to take the bladder...the cancer specialist said that if it was in the muscle..it's gotta go...it wasn't in the muscle...but now the vigilance begins....

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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17 years 9 months ago #770 by jhs
Replied by jhs on topic Noninvasive Grade 3?
Hello Rosemary,

I agree, of course, with Eric. I'm not so sure, in any event, that detailed discussions of statistical studies, etc., are as much a reflection of anyone's intelligence (certainly not mine) as they are of our concerns and anxieties about our condition. Some of us have a prediliction to go to the studies, and some of us have a bias to fact-check from experience and actual cases of friends and acquaintances around us. What we're all really trying to do is gather information and guidance that makes sense to us to help us both decide how to proceed as our own cases develop, and to shape our attitudes for dealing with them and our views of what the experience really means in our lives. Often, we don't even realize that we are engaging in that latter effort, but as we quietly give greater or lesser weight to the message of this or that approach/study/evidence, we are beginning to settle those issues in our minds, to marshal our courage behind those silent resolutions, and to move on. The great thing about this forum is that it allows people who look at this issue from different angles to get together and compare notes, and to keep each other honest, not to mention keeping each others' spirits up.

Welcome aboard!

r/

Jim

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17 years 9 months ago #769 by Eric_T
Replied by Eric_T on topic Noninvasive Grade 3?
ALL INPUT IS WELCOME

I LIKE SURVIVAL STORIES

dON'T MUCH LKE DIVORCE THO...ERIC

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17 years 9 months ago #768 by Rosemary
Replied by Rosemary on topic Noninvasive Grade 3?
Hey guys,
Maybe I don't belong in this discussion, because to be honest, the statistics and global projections all kind of boggle me...(though I have a pretty high IQ)

I feel better when I think of the bladder cancer outcomes I have seen and experienced closer in to my world...

For instance...the fella who I knew 25 yrs. ago and found him still alive today in
the state directory...what I remember most about that, is that after his diagnosis, he became very depressed and had to take anti-depressants and then his world fell apart because he got a divorce...but hopefully he is happy today, and things didn't happen the way he was afraid of when he got depressed...

My brother-in-law's brother had a very aggressive form of bladder cancer over 10 years ago. He had the bladder removal and the new bladder formed from his intestine...he got divorced too, but he remarried a very wealthy lady last year and is still alive over 10 yrs after bladder removal...

A man at my church had bladder cancer over 5 yrs ago and is still living..

My dental assistant's husband has BC and does BCG's and his cancer is back about every other visit, but he won't quit smoking...

A man who owns the local diner has BC and goes to Duke University for his treatments..

My co-worker's friend (in her 70's)had BC over 10 years ago, and it came back and she went to the medical university and had the bladder removal and so far is doing fine...

....

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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17 years 9 months ago #767 by Eric_T
Replied by Eric_T on topic Noninvasive Grade 3?
Jim-

Well stated-- you are on top of the variables! All Doctors eventually cop out with "ultimately it's your decision."

I appreciate your "overseas" concern. I spent 6 years in developing countries at a younger age, and occasionally feared for my family's medical safety. Hopefully your connections thru US Govt give you adequate options.

Good luck with your TURB--

Eric

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17 years 9 months ago #766 by jhs
Replied by jhs on topic Noninvasive Grade 3?
Hello again, Eric and Chris,

Thanks, Eric, for your detailed description of what your wife and you have been dealing with. Again, it sounds like you have, or have created for yourselves, excellent medical advice and guidance. You have also given me two more items to look into. I guess I had not encountered the idea of the inner linings of the urinary tract from the ureters through the urethra to be a single, continuous tissue, offering another vehicle for transmission of cancer outside the boundaries of the bladder. It offers yet another concern in the presence of bladder that shows a tendency to produce actively cancerous grade 3 tumors, even if they are only Ta.

Also, your mention of the concerns about handling and mixing interferon (given my overseas location) will warrant some questions. The time hasn't come for that yet, but it's worth looking into now.

Chris, I like your discussion of the micro-metastasis. I made a post in another discussion where I was trying to sort out the issue of stats, individual cases, and the issues at stake. The possibility of micro-metastasis, particularly with a G3 tumor, has the potential of making a mockery of playing the stats game, even if subsequent immunotherapies, cystoscopies, etc., show positive results and no recurrences, suggesting that one's individual case has better odds than the statistical trajectory shows. But, of course, we can't just throw in the towel and throw out our bladders, particularly if a micro-metastasis might make a mockery of that effort also. So, we try to get a comprehensive view of the most relevant and reliable studies, and assess our individual evolving cases against them to help us chart our course.

We also have to take advantage of our doctors' advice, and their experience and judgement in relating our cases against the study results. And while we're doing all of that, we have to try to screen out of all of that our - and even our doctors' - potential biases.

There seem to be a lot of pretty good stories on this forum about people who appear to be successfully fighting off tumors and recurrences and saving their bladders - including a 38-year old whose initial condition, I think, was, if you will, marginally statistically less favorable than yours. So I guess we all hope they make the 3 or 5 year mark, whatever it is, without relapse which might be taken as a cure. Bladder removal has a lot of potential advantages, if the cancer has been contained in the bladder, but it has a lot of potential complications, too. These include certain reproductive and related issues which are generally of greater import the younger one is (although there are solutions to these, also). So, the effort to evaluate what is really at stake in the decision becomes less clear at the same time that it becomes more urgent.

Thanks, Eric, for your detailed response, and for giving me so much to talk with my doctors about. One of my concerns is that, although I have access to a first-class facility and excellent doctors, the medical situation here in Turkey doesn't give me the comfortable feeling or assurance that I have access to a range of expert opinion and/or clinical testing that will be diverse enough to identify and bracket all the issues relevant to my case.

Thank you also, Chris, for your hard-nosed, aggressiveness about developing a frank understanding of the issues in the balance, here, and finding some tools for assessing them.

Chris, I think you said once that you had a clean first quarterly check. Are your doctors doing anything else with you?

I'll have my second TUR in just under 2 weeks. I happened to bump into my doc the other day, and he said, basically, that when he went in, he was going to check the site of the first TUR, and if it looked good, he would take a series of punches for biopsy material throughout the base of the removed G3 tumor. Otherwise, he would scoop off a slice across the whole base, and have that analyzed. I took the "otherwise" situation to mean that he might see the "residual" tumor material that I understand is not uncommon to be found when the removed tumor turns out to be G3.

I'll post the results, and will be interested to hear how your situations are proceeding.

r/

Jim

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