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Long term outcomes
So, I know the docs have been using BCG for 10-20 years now, and that has improved long term progression/recurrance free survival for many.
Myself, being in my mid-30’s with a history now of agressive T1 disease (T1G3), I have sort of been wondering what the long-term implications fo having bladder cancer are for seomone my age.
I realize that I have better chance than not of a fairly good (relatively) 5-year outcome, but when I start looking at the 10 & 15 year studies it becomes pretty obvious that the disease specific survival curves don’t really flatten out very well at the 5 year mark.
I mean I wonder if I really have a chance at being cured? Or for someone my age is it just a matter of time before it catches up to me.. Is an eventual cystectomy unavoidable? Will my cancer progress or metastisize 5, 10 or 20 years down the line?
I mean I realize I have about a 10% chance of metastasis in the next 2 years anyway, even after they removed my tumor. But I really want to be able to believe that if I make it to the 5 year mark without progression or recurrance that there is a good chance I’m cured.
I don’t know of any 30 or 40-year survivors with T1G3 bladder cancer. I mean I am sure that there were people in their 30’s and 40’s that had similar diagnosises to me back in 1965-1975. Are any of them still alive? Alive with their bladder? Any on the BC Webcafe forums?
I’d be really interested in hearing from anyone with G3 superficial cancer that has gone 20 years without a recurrance/progression..
Chris A.
Diagnosed T1G3 – 3/01/06
37 yo, Seattle, WA24 Replies-
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.
Chris A.
Diagnosed T1G3 – 3/01/06
37 yo, Seattle, WA
Chris,
I was wondering if you had read the following. It seems pretty recent…lots of stats…I was googling “bladder cancer protocol” and came upon it.
Have you read it and do you understand it?
http://www.nccn.org/professionals/physician_gls/PDF/bladder.pdf
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Jim,
You and I are same age, and it sounds like same diagnosis/prognosis.
It will be interesting to compare our playing hands in the future. Till then, we must keep the faith….Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Hello everyone,
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.
(Sorry about the long post!)
Best to all,
Jim
Hi Chris,
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,
Wendy
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
> ([email protected]) on Sunday, June 25, 2006 at 13:47:38
> ———————————————————————-
> —–
>
> 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?
>
> Thanks
> Chris Allison, Seattle, WA
Chris A.
Diagnosed T1G3 – 3/01/06
37 yo, Seattle, WA
Chris,
I agree that your age adds another factor. I don’t know what decision I would make if I was in your shoes. It was not an easy decision for me to have an RC. I did go a little on intuition. I felt in the back of my mind that having an RC now would be
my best chance at long term servival. As far as sexual function I can tell you that I am able to achieve a total erection post surgery, but not all men are as lucky. I had a very skilled surgeon, and so far it looks like my neobladdder is going to funtion as designed. A diagnoses of T1G3 puts a person in a difficult situation and I know exactly what you are going through. I wish you the best in whatever direction you take.KC
Age 59
DX Jan 2006 – T1B G3
RC – Neobladder June 2006
Alyssa,
I’m not sure of the specifics of your tumor, but if you had a primary, solitary TaG2, less than 3 cm in diameter, and no co-contiminant CIS, then the EORTC risk tables would put your overall risk of recurrance at 46% over 5 years and overall risk of progression at less than 1%..
http://www.eortc.be/tools/bladdercalculator/default.htm
I’m making the assumption that your tumor was less than 3 cm, if it was bigger then the statistics change a bit.
These statistics are from the EROTC data from 2,600 patients – people with a similar diagnosis had a reoccurance nearly 50% of the time (over a 5 year period). I would imagine that not many of these people were 26 years old, so maybe what your Doctor is telling you is correct, but I would doubt he has had too many 26 year old bladder cancer patients to compare your case with either.
Chris A.
Diagnosed T1G3 – 3/01/06
37 yo, Seattle, WA
Chris,
” So, for the reason we don’t appear to have any of these long term G3 survivors on the webcafe boards again must just be the nature of the board”This is exactly what my Doctor told me the other day….
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
HI Chris
You seem very knowledgable. I was wondering if you or anyone else knew the risk of progression or reoccurence in a ta low grade (2 of 4) tumor. I am also very young with three small children. My urologist stated that he felt it would not come back. I also wondered if this type of tumor has any chance of metastasizing. I had a chest x-ray, blood work, and an IVP all were normal. I never had any type of cat scan though. It is very scary to be so young with this desease. I hope as time passes the worry will decrease.
Thanks,
Alyssa
KC,
Yes, I remember you were a bit anxious about your diagnosis. Glad you are recovering well. I do agree that having the bladder out would help alieve that worry/stress of progression/mets. With one single T1G3 tumor I guess I can hope its a fluke one time event, where if like in your case if multiple T1G3s are present upon diagnosis, it would seem to indicate that there was a more prevalent change in the bladder lining.
There is also the issue with age, being 35, even if I had a neobladder constructed, I really don’t believe those things will last longer than 20-30 years before becoming problematic and requiring a replacement. Now at 54, if your neobladder lasts 30 years, thats probably around as long as you will need it. And of course impotency is something else I would rather not deal with at 35. If I were 55-60 I am sure it wouldn’t bother me as much (or so my dad tells me :) )
I had a second opinion done at the UW Medical Center out here in Seattle this afternoon, where the chairman of the urology department Dr. Lange confirmed my original urologists statistics/EORTC statistics that I probably had about a 5-year 17% chance of progression and 45% chance of recurrance (after my initial course of BCG treatments) or less. He also indicated that he probably wouldn’t perform maintenance in my case, as he did not believe the benefits were worth the trouble, pointing out that most people don’t even complete the maintenance schedules, and soemtimes the BCG treatments themselves ruin the bladder.
Dr Lang also agreed with my observations in the 16 year EORTC bladder cancer risk graphs that after 5-10 years the risk graphs appear to flatten out, indicating most people making it to this point are in fact cured (although there will always be a few late recurrances/progressors). He indicated that the first couple years are the most important.
And most importantly, he did confirm that he has long term T1G3 survivors with their bladder intact 20+ years later, some were patients being treated prior to him being a doctor.
So, for the reason we don’t appear to have any of these long term G3 survivors on the webcafe boards again must just be the nature of the board.. People diagnosed 7+ years ago (prior to Webcafe) who didn’t get a bladder replacement or die, probably found their support network elsewhere, are now “cured” on yearly cystos not impacting their life on a daily basis. Seems weird, but maybe the nature of the board just draws people who need support for their cancer, i.e. people dealing with day-to-day urinary diversion problems, people with mets discussing treatment and newly diagnosed worriers. So, if my theory is correct we probably don’t even have very many TaG1 20 year vetrans on the board, although I would expect more (but not that many) people with long-term neobladder diversions.
I guess that gives the perception to some of the newly diagnosed that you either end up with a urinary diversion or mets, when according to my consult with Dr. Lange and the EORTC statistics (among others), its obvious that there is probably a number of long term T1G3 surviors with intact bladders/cured.
Of course another part of me suspects both urologists colluding to feed me a rosy picture get me to stop worrying about dying.
Chris A.
Diagnosed T1G3 – 3/01/06
37 yo, Seattle, WA
Hi Chris,
As you already know you and I had similar diagnoses. Although I had two T1G3 tumors. You probably have also read my other posts and know that I chose to have a RC/w Neobladder. It was not an easy decision, but now that the Rc is over, the one thing that has improved is my stress level. I was really stressed wondering if cancer was going to, or already had spread. I found it hard to concentrate on day to day living. I feltmy cancer was a constant threat. My urologist was all for bladder preservation, but said he could not rule out RC. He said it was my decision and described it as a double edge sword. Going after bladder preservation may end in failure and death from BC and an RC could result in compications in the future. Although I am not as young as you, (I am 54) I feel I have many good years ahead. I will list my reasoning for opting for early RC. Please note that I am just stating my position. The decision you make has to be what you are comfortable with. It is true that some people who choose bladder presevation will live out there life with an intact bladder. The problem is that it comes down to odds and no one can acuratly predict the outcome. Here is my reasoning for choosing early RC1) Grade 3 tumors pose a lethal threat life long.
2) The chanceof my cancer returning was high and I wou probably be facing an eventual RC anyway.
3) There was already a 10 or 20 per cent chance that a T1 G3 tumor had spread to the prostate or lymph nodes.
4) the majority of people with neobladders, or other diversions live a high quality life and do everything they did before sugery.
5) There is a high probability (25%) of getting tcc of the kidney or prostatic urealtheral cancer with bladder preservation.
6) Prostatic involvement in the future would jeapodize neobladder creation.
7) Complications due to urinary diversions can be corrected, cancer spread beyond the bladder is very often fatal.I am now 5 weeks post RC and am already stating to get back to my normal life and the stress and worry about the cancer is gone. I wish you luck in the decision you make. It sounds like you are going on with bladder sparring and I support you on that decision and wish you the best. It is not easy living with this cancer and the choices that have to be made are unbeleivably dificult.
wishing you the best
KC
Age 59
DX Jan 2006 – T1B G3
RC – Neobladder June 2006
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.
http://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.
Chris A.
Diagnosed T1G3 – 3/01/06
37 yo, Seattle, WA
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:
http://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
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