Monday, April 13, 2009

Recurrence, Progression, Staging, Grading

There is a lot of discussion "out there" about recurrence, progression, staging, grading (i.e. what stage is the cancer, what grade are the tumors) and the sad thing is that a lot of it is pretty sub-standard. Some of it is based on old, outdated information, some of it is bad interpretation of lots of statistics, sadly that's not limited to laypeople, some medical (or allegedly medical) sites are no better.

In a nutshell, I will summarize something here that I think I will probably write up in more detail at some later point.

There are only two kinds of bladder cancer tumors. Low grade and High grade. Low grade are non-invasive, and luckily are much more common than high grade. High grade are invasive, aggressive and need to be treated very differently than low grade tumors.

There is no such thing as intermediate grade tumors. Those are high grade tumors that were caught early or underdiagnosed/understaged. There is no such thing as superficial bladder cancer per se. There are low grade tumors which are superficial and will stay that way (in 98% of cases) and there are high grade tumors which are superficial because they are caught very early but they WILL become invasive in something like 50% of all cases (or more or less depending on how you interpret the numbers).

Basically, progression is the important thing to worry about. Low grade cancer tends not to progress. This is why it's less dangerous and even though it has high recurrence rate (though it's not clear to me how high, as the numbers drop a lot through the years probably due to better surgical techniques in getting it all during the first TURBTs) it's not as dangerous due to its seeming tendency to stay strictly in (on) the bladder lining.

So, when I post whatever results I post on May 13th (or possibly earlier as the pathology results may be available before that, but May 13th is when I go meet the doctor for the first time after that) the key finding will not be that the tumors are Ta (meaning superficial or non-muscle invasive) but that they are "low grade" meaning that their _potential_ for invading is extremely low. If they are high-grade, then it doesn't matter that they haven't invaded muscle yet, the latest research all points to immediate and aggressive treatment. It is the grade, not the stage that is most important to me now. If it's high grade and low stage, then I'm very lucky and I get to have more choices in treatment. If it's low grade, then it gets removed, we talk about chance of recurrence, and figure out what else we may do to minimize the chances of that.

Now, having said all that and probably scared some of you, the indications are very many that mine are low grade tumors. In addition to general statistics that say that
a) most bladder tumors are low grade
b) most pappilary tumors (the kind that I have) are low grade
c) tumors discovered in younger adults are far more likely to be low grade and in older adults more likely to be high grade
d) tumors on lateral walls tend to be low grade, tumors on the dome tend to be high grade (mine are on the lateral walls)
e) two experienced urologists suggested that on the surface/visually my tumors had the appearance of low grade tumors.

The final and definitive answer can only be found microscopically by an experienced pathologist (and hopefully confirmed by a second opinion if anything is at all in the "grey area"). But so far all the indications are that these are low grade tumors.

We'll know for sure somewhere in the first half of May.

3 comments:

Mark said...

Last night I shared your blog with a co-worker (male) whose girlfriend is about your age, a smoker, and has had UTI problems with some frequency in the past. Today I wasn't in the office, but I understand my co-worker came in without his usual pack of cigarettes, and with a new package of nicotine gum - chewing up a storm. You go girl!

Asya said...

I wonder how many guys would actually be more scared of bladder cancer than lung cancer... I mean bladder cancer has much better expected outcome than lung cancer, but somehow maybe it's scarier because we don't hear that much about it...

Tauralaura said...

Today I learned from my loving cousin what is going on with you. Thank you for making yourself vulnerable and exposing yourself [and your bladder] to the entire world for the explicit purpose of educating people on the risk factors, signs and symptoms of bladder cancer. I love you and respect what you are doing! I am also holding May 13 in my calendar so that I can come celebrate your cancer-free news. Much love to you.