Yosarian, welcome to the club nobody wants to join. Thank you for your story. I wish you well with your treatments!
Zach, Pat, in Rosie's defense, she has been doing a hell of a lot of research over the years and follows the literature closely, this I know for a fact. I agree with Rosie that large and famous institutions like Sloan are sometimes amazingly slow to adapt updated protocols, I could cite a few examples from Sloan, my sister goes there for these past 8 years. They don't agree about BCG maintenance, do second rounds of six; my sister's doctor recently said there's no proof that photodynamic cystoscopy is any good (there is so! that is why she asked, see:
blcwebcafe.org/hexvix.asp
) Until recently their only bladder sparing protocol was MVAC, that may be changed by now I hope.
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{{{modified: I was wrong, Sloan does use the blue light as well as the latest bladder sparing protocols. As an institutions it's a trend setter for surgical quality, new chemos, a wonderful cancer center.}}}
Dr. Herr is very good, very prolific but there are more ways to skin a cat than what Sloan does... For example, the Mayo and MDAnderson approach certain cases with opposing protocols (i.e.: neoadjuvant chemo vs. adjuvant). In the world of cancer treatments in general and blc in particular, nothing is standard, aside from follow up scheduling (maybe). Not BCG schedules, not maintenance protocols, doses, chemos, you name it.
Thus, if a person has the time and drive, we can often become almost as knowledgeable as our doctors themselves and help guide our own treatments to fit our own individual needs. A good example would be choosing an approach like Rosie's "watchful waiting" (Zach, the particulars can be found here:
blcwebcafe.org/superficialblca.asp
and it is an American phenomenon). Another good example is how Zach and Pat chose their desired types of diversions after bladder removal.
BTW, Rosie is not citing strictly European guidelines, the same guidelines have been adapted in the US, not officially though. I'm referring to the one-shot, post-TUR chemo here...Mitomycin is widely used all over the world due to the fact it has the most data about it. Europe is now using Epirubicin, the US leaning towards Gemzar but both need much more data. No one chemo has been shown to be better than another as an intravesical therapy, till this point in time. And this is after about 30 years.
I attended a conference about bladder cancer (in Europe, where I live) recently and the expert, Dr. Witjes said that probably the most important factor about intravesical chemo is not which drug is used, but rather whether or not it is buffered as in the "Au" protocol for Mitomycin, which improved results (see
blcwebcafe.org/mitomycinprotocol.asp
, and whether the bladder is totally emptied! Simple innovations can be the key.
There are two new uses of Mitomycin in the works in Europe, Synergo and EMDA (both have pages on WebCafe), both improve outcomes. Both need special equipment and for this reasons neither approach is gaining popularity (nobody wants to invest in bladder cancer equipment, not even the blue light cysto/Hexvix).
There are many reasons a doctor might choose one drug over another and it would be interesting to know why (cheapest? stock expiring? free sample from a pharm company? a -
gasp-trial?).
Dr. O'Donnell from U of Iowa is studying a combination of intravesical taxotere and gemzar because of their properties and synergy and low toxicity; at least there is logic to it. And I'm all for lowering toxicity.
Rosemary recently mentioned that her doctor stopped using Mitomycin because of risks. It's true that it caused at least one reported death when the bladder had been perforated. The other chemos may be less toxic but it still remains to be proven with time and hopefully a trial or two. In the meantime Mitmycin is still alive and well and being used all the time.
New chemo drugs are being instilled in bladders all the time too, with no apparent logic other than it's another drug and MIGHT be better; but in all these years of using intravesical chemos there has been no improvement in recurrence rates, only delay btw. recurs, and drs say this is cost effective (delaying a TUR), and so that must be good.
I'm not 100% sure about anything because there are no treatments giving a 100% cure!
Nothing-but-nothing is written in stone in this game. For every study there is one that will conflict the findings. There is a bad lack of level-3 data for bladder cancer studies. Only MVAC for invasive blc has been more or less adequately studied. And now it has been commonly replaced by Gemzar and Cisplatin (for invasive tumors, usually before or after cystectomy), with very little data backing it up, and no phase III trials yet.
Long story short...protocols vary widely, no matter where in the world we are getting treatment for bladder cancer.
By the way, my sister had a Ta, G1 tumor, 3 cm, it was removed with no further treatment. She had 2 recurs the first year and now has been clean for about 6 years. I'm glad she did not receive the post-op chemo, but that is hindsight helping me feel this way...other doctors might have put her on BCG, I'm glad that did not happen either. Hindsight..it's 20/20.
