Excellent guidelines for treatment. The American Cancer Society has a booklett/phamplett with much of the same information thats available at most hospitals. If you find your diagnosis on the flow charts starting at page BL-1 you can follow the same guidlines as you doctor uses for your treatment. It will show you the possible courses of action/treatment your doctor will follow depending on your diagnosis or resulting course of disease progression.
I see the urologist I had my second opinion with (Paul Lange - U.W. Medical center) and the fameous Dr. Herr were both contributing NCCN panel members (authors?).
I followed my diagnosis of T1G3 and it confirmed that in my case BCG maintenance was not suggested (as my urologists have been telling me).
Thanks Rosemary, I am sure others will find this link helpfull.
Diagnosed T1G3 - 3/01/06
37 yo, Seattle, WA
I think this topic has attracted so much interest because Chris's particular diagnosis combined with his youth has presented him with a dillema that resonates even with many of us who are older (I'm 54), because even we can reasonably expect to have decades of life ahead of us. My maternal grandmother, for example, lived to 102, and until the end she lived in the house where she gave birth to and raised my mother and uncles and aunts. With, under ordinary circumstances, more or less reasonable expectations of such a life-span combined with reasonable health and independence, how are we to evaluate the presentation of a disease that may either deny that to us, or adversely affect its quality?
To me, an interesting aspect of this conversation has been the effort to determine how to apply statistical findings to individual situations. As we all know, statistics are backward-looking complilations of the histories of numbers of individuals. When reduced to statistical form, they immediately distort both the reality of those individual stories and sometimes falsely suggest projections into our own individual lives that aren't predictive of what our actual experience will be. The meaning of this is made more clear when we remind ourselves of what is at stake - it's that question that this discussion seems to be trying to come to terms with.
It's sort of like you are playing poker with your life. Let's say that your initial diagnosis, in my case, superficial cancerous tumor in the bladder, has indicated that the game you're playing turns out to be 7-card stud. In that game, there are certain things you can see about the hand being played, and certain things you can't see. After the first round of cards are dealt, each player has two down cards that you can't see, and one face up card that everyone can see (never mind that in the actual game you can see your own down cards; we'll presume we can't for this analogy). That up card represents your first TUR. In my case, my doctor was delighted. He believed his initial guess that the tumor was Grade 1 or, at most, Grade 2, was correct, he had gotten it all, and it looked definitely like it was in fact a noninvasive Ta. He told me it looked like we might wind up needing only quarterly cystoscopy checks.
Then the patholgy report came back. That was another up card. It indicated the tumor was Grade 3. This changed everything. Suddenly I needed another TUR to be followed, at a minimum, by BCG immunotherapy. The second TUR will occur in 2 weeks, and we'll see what kind of card that turns up.
The point is that whatever the stats say regarding the historical experience of people with superficial high grade tumors, they don't say them about any particular person, nor, certainly, about me. Only my own cards do that, and I can't see two of them. Let me try putting it this way. Let's say that you and I each initially have a single TaG3 bladder tumor. As time goes by, with additional TURs, BCG, etc, we turn up the exact same cards; I have four cards leading to a royal flush, the highest hand possible, and so do you. Does that mean we should both bet the farm that one of our down cards will finish out that flush, and we can keep our bladders? If the tumor was G1, maybe, but the problem seems to be that the G3 status of that initial tumor, suggests a widely variable range of "final outcome" cards buried in the unseen down cards. Mine might turn out to not complete the royal flush, and as I continue to bet that they do, I wind up losing both my bladder and my life. Yours might complete the flush - this time. With a G3 tumor, it seems that the poker game never ends, and you will continue to be betting your life against your bladder. In other words, no matter what trajectory the stats seem to be taking as additional visible evidence accumulates, they could be exactly wrong - they could appear to be predicting what is simply not "in the cards."
So this returns us to considering the stakes. What are we actually playing poker for? What's in the pot? Our bladder? What are we betting with? Our lives? It seems to me that there is no avoiding the conclusion that, when you have a grade 3 tumor, what you're gambling with is your life. Ta (or T1) is very reassuring by itself, but when the tumor grade card turns up grade 3, it suggests one or both of two things. One is about future "up" cards: they are more likely to produce additional tumors and/or progression of the stage of the disease, possibly denying you the chance to exchange your bladder for your life. The other is about the "down," or unseen, cards: a grade 3 tumor suggests that there may be something wrong with the Ta assessment, that so aggressive and fast-growing a tumor may have accomplished penetration that was missed by the biopsy - future TURBs, etc, will establish the actual veracity of the initial diagnosis in that regard, but cannot rule out the unpredictable (with actionable precision) likelihood that a bladder that was sick enough to produce one Grade 3 tumor that was, fortunately, caught in a non-invasive condition, won't produce others that simply grow the other way, that rapidly penetrate the bladder wall and beyond.
There's a saying that you never gamble with what you can't afford to lose. The odds could be 90% - they could be 99.9% - that you will win your bet, but if you can't afford to pay in the 0.1% likelihood that you lose, then you can't afford to play.
Wendy told me recently that when the primary tumor at initial diagnosis is Grade 3, and immunotherapy turns out to be unsuccessful, most doctors recommend bladder removal. This suggests that the doctors are ignoring the stats, and looking at the individual case - and also considering what's at stake.
I have found a great number of positive things about discovering this forum and the associated listserve, but key among them is learning that once the evidence indicates it is appropriate to do so, once enough cards turn over to suggest that you can't win the hand, it's okay to fold, give up your bladder, and keep your life - it can still be a long, productive, and enjoyable one.
As for whether I'm betting or folding, I'm going to go through with the next TURB, hopefully the pathology report will confirm the Ta status, and in that event I'll go through the BCG treatement. But I will bear in mind Wendy's admonition that the key issue for me is the Grade 3 tumor, and that a recurrence will weigh heavily toward folding my hand and considering bladder removal. While my wife and I take some comfort from the Ta side of the diagnosis, we have also taken the hint about the gravity of the G3 side of it. We're focusing on my own current individual case, what our goal is (to beat my grandmother's family record, and to do so as productive, active people); we have learned from others in this forum that living a "bladder-free" life increasingly means living a full, enjoyable - and cancer-free - life; we are happy to take comfort from that.
I wanted to concur with your assumptions about the WebCafe forum and discussion list. Yes, we have attracted more and more people with invasive bladder cancer. When the list first began it was a handful of bladder-sparers that would do anything to keep their bladders. That drove away those who needed surgery as they felt insulted by the tone of the group. Then slowly but surely over the course of 7-8 yrs the nature of the group turned around. The bladder-sparers either left the group to get on with life and forget about cancer as much as they could, or had progression that led to radical cystectomy.
Now the discussion group/list is definitely dominated by post-surgical survivors, and the Ta, Grade 1 folks have gotten quieter, most have left.
So no, WebCafe's stories, forums and group are not a typical cross
-section of the bladder cancer community, which in reality is dominated by those with low grade, non-invasive tumors. But it's the folks with the serious concerns that are out here looking for answers and support.
All the best,
PS Great letter to Dr. Lamm, and his response is great too.
Very Long Term Follow of G3, T1 Bladder Cancer Dear Chris:
It is good to hear that you are disease free following induction BCG for G3,T1 bladder cancer. The size of your tumor (less than 3cm), absence of CIS, and single site are all good prognostic features. No, we don't have 30 year follow up, but I have many patients who have gone much more than 10 years without recurrence. Because of the life long risk for tumor recurrence, I have modified my original 3 week maintenance schedule to extend the treatment. Using reduced (1/3 or less dose) I give yearly BCG (weekly for up to 3 weeks) at years 4,5,and 6, and then every other year for years 8, 10 and 12. For patients who present in their 70's, this is usually sufficient. At age 35, you may need to go to every 3 years after year 12. You will be breaking new ground! Do all you can to eliminate carcinogens, including second hand smoke, from your environment, take Oncovite 2 tablets twice a day, and keep your postitive attitude. Thanks for asking, Don Lamm, MD
> Below is the result of your feedback form. It was submitted by
> question: Dr. Lamm,
> I am a 35 year old M, unfortunately used smokless tobacco for approx
> 20 years (since quit). Was diagnosed in March '06 with a solitary 2
> cm T1G3 (no evident co-CIS). Following TURB did 6X BCG Induction
> course. 3 month check-up cystoscopy clear, Planning on following your
> 3 year BCG maintenance schedule. I've seen the 5 year statistics, but
> for a young guy like myself is it really possible I'll be around in 30
> years with my bladder? Has anyone done any long-term outcome studies
> on younger patients with T1G3 bladder cancer?
> Chris Allison, Seattle, WA
Diagnosed T1G3 - 3/01/06
37 yo, Seattle, WA