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42yrs, high grade, aggressive T2 - what are my odds?

2 years 11 months ago #53341 by Cynthia
You are welcome as the sunshine in May here. However your user name bothers me a great deal. We are all equal here, invasive, noninvasive, old or young. Because our enemy is larger than any of our differences. Could we please chose a different user name for you? I vote for Survivor1
You will have a lot to think about I am sure others will chime in about nerve sparing and other possible options.
I believe everything comes down to the bottom line. Your bottom line may differ from mine but only you can decide what yours is. For myself it was finding a solution that gave me the best change to go on having a good life. Sometimes in life there are no easy solutions but I promise it is doable.
Let me know about your username, who knows you may get other suggestions.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
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2 years 11 months ago #53338 by _substandard
I had the chance to discuss my case with an experienced urology oncologist in Riverside, CA today. I've also asked him the same questions we discussed here in this thread and his answers were rather encouraging:

As we know Chemotherapy does not really kill the entire high grade/aggressive (same meaning) type of cancer though it has good chances to shrink it before the RC surgery. However chemotherapy works well in killing the microscopic cancer cells which might already had spread from the bladder into the blood stream. That way chemotherapy helps a lot to prevent even the highly aggressive cancer from re-occuring.

The official 50-60% survival rate for our "T2 club" is therefore not entirely accurate for our 40-60 year old generation. Even considering the aggressiveness of our cancer type doesn't influence this notion so much.

As for the option to not remove the bladder after chemotherapy he said that procedure was standard in Italy for some time. The measured rate of re-occuring cancer was around 90% though.

I'll keep you posted!
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2 years 11 months ago #53332 by cltyxx

Well said... I think the other important metric which I have not seen discussed is the survival rate of those taking RC vs. those not taking RC with the same stages. I have read some articles online that due to not randomized sample, it is not conclusive but roughly like 50% vs. 50%.

Just for discussion purpose.

Cystoscopy - 03/23/17
TURBT - 04/06/17
Waiting for 2nd TURBT
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2 years 11 months ago - 2 years 11 months ago #53330 by MoreLife
The cited 63% "relative" survival rate for T2 patients diagnosed 1988-2001 is (1) surely lower than the relative survival rate for T2 patients diagnosed in 2017, and (2) a generalized way to try to home in on the odds of dying specifically from BC (meaning that for that vintage of T2 patients more than 37% died within 5 years, if you include deaths from other causes), with that general adjustment not necessarily being accurate for all ages and other individual nuances. But it's a correlation, and correlation doesn't necessarily mean causation. For example, a large share of those diagnosed with BC in that period were heavy smokers. So to some extent, that 63% figure is saying "patients diagnosed with BC then were more likely than the general population to be heavy smokers, and heavy smokers were significantly less likely to survive their next five years than was the general population."

To see through that sort of confound, it would be good to be able to estimate an absolute rather than relative survival rate for an age-specific, stage-specific subset of BC diagnoses, and then compare it to the absolute survival rate for the same age in the general population.

As cited earlier in this thread, http://www.cancer.net/cancer-types/bladder-cancer/statistics states that for muscle-invasive bladder cancer confined to the bladder (that is, for T2, excluding T3 and T4, and with N=0) the recent 5-year survival rate (which I read as the specific=absolute survival rate, not a "relative" rate) is 70%. The same article says that "the average age people are diagnosed with bladder cancer is 73." According to the Social Security actuarial table I cited earlier, about 18% of US males aged 73 will die within their next 5 years. (I get that by summing the table's yearly death percentages for ages 73, 74, 75, 76, and 77.) So as a crude adjustment, if we suppose hypothetically that all T2-diagnosed, other-stage-excluded patients are male and exactly 73 years old, these statistics seem to indicate that 30% die from something within 5 years, and 18% of them would die without MIBC, so 12% will die from BC. That is, to a first approximation 12% of T=2, N=0 MIBC victims die specifically from MIBC and most of those victims are considerably older than the OP's 42 years or my 54 years. On that basis, and assuming neither the OP or I turns out to have worse than the average T=2, N=0 condition, I have to think that with the greater general resiliency of younger patients (ability to tolerate dense-dose chemo, recovery from surgery, etc.) we each have a less than 12% chance of dying within 5 years and having the cause attributed to MIBC.

Also, with MIBC, there's not much difference between 5-year survival rates and 10- or 15-year survival rates; to a first approximation, if you last that long you're probably home free.

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2 years 11 months ago #53329 by cltyxx
Hi MoreLife,

Like what you said on numbers. I found a few detail metrics from following link.


The numbers below are based on thousands of people diagnosed with bladder cancer from 1988 to 2001. These numbers come from the National Cancer Institute’s SEER database.

The 5-year relative survival rate for people with stage 0 bladder cancer is about 98%.
The 5-year relative survival rate for people with stage I bladder cancer is about 88%.
For stage II bladder cancer, the 5-year relative survival rate is about 63%.
The 5-year relative survival rate for stage III bladder cancer is about 46%.
Bladder cancer that has spread to other parts of the body is often hard to treat. Stage IV bladder cancer has a relative 5-year survival rate of about 15%. Still, there are often treatment options available for people with this stage of cancer.

So, the odds of beating Stage II Bladder Cancer is well above 50%. But it would be different for each individual.

Again, good luck to all of us!

Cystoscopy - 03/23/17
TURBT - 04/06/17
Waiting for 2nd TURBT

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2 years 11 months ago - 2 years 11 months ago #53326 by MoreLife
I have a vital interest in a similar question, as I too have recently-diagnosed MIBC, at age 54. I'm good at math but found the nomenclature of cancer statistics somewhat daunting -- for example, does "Stage 2 bladder cancer specific five-year survival rate" mean the 5-year survival rate for the specific population that has that diagnosis, or the share of the diagnosed population that won't die within that period from that diagnosed disease (although some of those "survivors" will die from something else, like auto accidents)? It makes a huge difference in interpreting the odds but most writing on the subject (whether technical articles in the medical journals or articles written for patients or general audiences) simply assume the reader understands. But if this (http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer/art-20044517) is written correctly, IT'S THE FORMER: Stage 2 bladder cancer specific five-year survival rate" means the 5-year survival rate for the specific population that has that diagnosis, with members of the diagnosed population who die within that period counted as non-survivors without regard to their cause of death. Which is hugely important to you and me, so if I have that wrong somebody PLEASE SAY SO. The reason it's so important is that most bladder cancers are diagnosed in a relatively aged population that has a relatively high expected mortality rate even before a cancer diagnosis. For example, https://www.ssa.gov/oact/STATS/table4c6.html indicates that 9% of U.S. males aged 65 die before they reach 70.

I found this hugely encouraging, though it's a small sample. http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer/art-20044517 . Among T2 bladder cancer patients, "cancer specific survival [rates] were 94%.. for patients with tumors <3 cm (P = 0.006) and...73%, for patients with tumors ≥3 cm (P = 0.005). And that was for patients treated at the Mayo Clinic 1980-84; there have been a lot of advances in the relevant medical arts since then.

So, after having done a lot of reading and consulting with doctors, I think your odds of beating this if it is stage 2 and not stage 3 or 4 are well over 50%. The cloud in that silver lining is that until the RC procedure gets at the surrounding fat and lymph nodes, you can't know for _sure_ that it isn't more than stage 2 (though imaging etc. can provide some comfort there).
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