Long term outcomes

Chris,

Okay, sorry that one didn't provide any benefit for you; please do note, though, that the study continued until 1993, well into the BCG era, and discusses in detail the status of the study participants as of that year. In any event it wasn't even of any particular relevance for me, but I had hoped it would provide some depth and background to the statistics you've been assessing. I don't have the standing to assess the quality of the research, but had hoped that I could rely on those chosen by the NCI specifically for the use of doctors making treatment decisions; I don't know about the other studies you cite, but the shortcomings you identify in them don't seem to be shared by the one NCI cites.

I'll continue to keep an eye out for your request for a correspondent who meets your specifications. I'll tell you this: if I had your concern, I wouldn't hesitate to contact the researchers involved in some of these projects to see if they could advise me on how to proceed. You might be surprised to see what you come up with.

In the meanwhile, perhaps you, or visitors who read these posts as part of their efforts to understand and cope with what's happening to them, might want to give the NCI link I gave in my previous post another chance. Be sure to use the healthprovider page - not the patient page - it provides a good discussion of treatment protocols recommended for use or typically used by doctors, along with the rationale for those choices, for every stage of the disease, and it's updated as of two months ago.

Continued good luck!

r/

Jim

Jim,

Thanks for the link.  You have to be very careful believing anything you read out there in cyberspace.  Quite often the abstracts will fool you.  That particular study was done in Sweden on Ta and T1 bladder cancer patients treated between 1963 and 1972.  It was done pre-BCG and reflects the natural course of the disease without BCG treatments.

www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=7752327&dopt=Abstract

Many of the studies I have found don't have a large enough base group to be statistically significant, or they don't differentiate between the specifics of the patients. Sometimes it isn't until you dig down into the report (not the abstract) that you find that only half the patients were given BCG or all the patients entered into the study were actually entered on their first high grade recurrance (instead of their primary recurrance)... Issues like that stack the deck and skew the statistics.

Other studies may include patients catorigized as stage T1, but because no muscle was removed during their initial TURB, their resection was never actually complete.  So, they may actually have had a T2 or T3 invasive tumor and even with BCG they progress/die - such a study may incorrectly report having a larger progression rate for T1 disease than other studies.

Other studies may be age biased.  I'm sure there are many senile 98 year olds in nursing homes, who if followed up regularly with top care would not progress or die of invasive bladder cancer.  However some studies just take a retroactive look at death certificates and that senile 98 year old becomes a disease specific progression/death statistic on some 20 year study.  How does that statistic compare to a 35 year old going to quarterly cystos and having BCG treatments?  It doesn't.

The EORTC risk tables are the best study I have seen to date to help guage an individuals specific recurrance and progression rate based on his/her tumor characteristics.

Hello Chris,

While poking around on the internet, I saw a reference that reminded me of this thread. It is to a study of patients with Ta or T1 tumors "who were followed for a minimum of 20 years," and it indicates that the risk of recurrence after the initial TUR was 80%. The interesting thing about this site, though, is the effective way it describes how additional features of the cancers affect prognosis and recommended treatment protocols, including some information on new protocols in clinical evaluation. It is a National Cancer Institute site. The linked page has an overview, with links on the left covering prognostic elements and treatment options in greater detail for each stage. Here it is:

www.cancer.gov/cancertopics/pdq/treatment/bladder/healthprofessional  

I think you'll appreciate the way the material is presented. There is a patient version, but it just outlines the options with little or no explanation. I know you have probably already seen this, since it comes up readily on internet searches, and is probably standard fare for people like us, but here it is anyway, just in case.

Glad to hear your 1st 3-mo check was clear. Hang in there.

r/

Jim

Oh, he did say..."We do have percentages.." which is what you are talking about...

I know that he doesn't send all of his patients to the prominent bladder cancer specialist, but he sent me, and they both said it was because of my age..
(I'm 54)...

Chris,
Have you had a 2nd opinion?

My doc and I had a long talk yesterday...My brain is not good with details, (like yours), but my brain works well enough...and I came away feeling like:

1. I'm not as scared of this cancer as I should be
2. No one knows how this cancer is going to behave
3. It's hard to know long-term survival from a younger age
4. People who have their bladder removed do really well
5. My doc sees a lot of bladder cancer

There was more, but it hasn't all sunk in yet...there was positive stuff in there, though...

HI

I am 26 years old with a low grade non-invasive t.c.c. . My urologist told me that from his experience when a young person gets this desease, and it is low grade, it usually never returns. I am not sure about your case since you have a high grade tumor. I do however share your concern of being so young with this desease.

good luck to you,
Alyssa