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Cancer,BCG & me

12 years 8 months ago #6825 by wendy

Early on in my BC treatment my doc gave me a single instillation of mitomycin for recurrent low grade tumours. This gave me my longest disease-free period of two years. I read elsewhere on this site that Mitomycin is being restricted because of some fatalities


Tim, Mitomycin is not being restricted, on the contrary it is getting more and more common due to all the press and new guidelines on the usefulness of the post-TUR dose. Mito is popular both in Europe and the U.S, though both countries also use other drugs because they are all panning out to be more or less equally effective. New ones are being tried all the time, and O'Donnell is far in the forefront at using innovative combinations. He has been at the forefront of many things in the field of intravesical therapies, such as BCG+Interferon, too.

It was Rosemary's doctor who said it was too toxic and won't use it, but that is the only time I've heard of this happening (on this site at least). I wrote to our medical advisors and all three use Mitomycin in the post-TUR setting for low grade tumors.

I did hear a European expert admit that Mitomycin had caused a death in this setting because the bladder had been perforated and they didn't realize it. I bet most intravesical chemos would cause bad side effects if leaked into bloodstream, and BCG might kill ya too, if this happened.

Time you also said, "As Wendy confirms above, BCG was only mentioned when the CIS appeared." Make that BCG *maintenance* is usually reserved for cases of CIS, at least in Europe. High grade Ta/T1 tumors will almost always receive BCG as the first line therapy.

If that isn't confusing enough, it is also quite common to receive two rounds of 6 BCG's and no maintenance; there are other maintenance schedules than Lamm's in use, such as monthly for a year. Unfortunately there's no universal agreement, though just about all are coming to agree that "some kind" of BCG maintenance is better for CIS.

I only bring this up in order to point out that there are no 'rights' and no 'wrongs', only a variety of options.

In my above post, "Extended maintenance schedules have been shown to increase survival in these cases, but not for low grade tumors." To clarify, low grade tumors have extremely good survival, short and long term, what I meant to say was BCG wasn't shown to increase *recurrence free survival* in Ta, G1 tumors (and intravesical chemo is said to increase recurrence free survival with benefits lasting about about 2 yrs). But many doctors use BCG for intermediate risk tumors as well, and the size of 5cm, which puts it in a higher recur-risk category, is the reason BCG is recommended for our new buddy Tommy.

Sorry for the confusion.
Wendy

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12 years 8 months ago #6823 by timb
Early on in my BC treatment my doc gave me a single instillation of mitomycin for recurrent low grade tumours. This gave me my longest disease-free period of two years. I read elsewhere on this site that Mitomycin is being restricted because of some fatalities. I thought the risks were always well understood and that aspirin has also caused fatalities so I don't quite get it but I guess they know what they are doing. As Wendy confirms above, BCG was only mentioned when the CIS appeared.

Tim

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12 years 8 months ago #6815 by Rosie
Wendy,
Thanks for the http://www.eortc.be/tools/bladdercalculator/default.htm
sight. I had not seen that before. I also read the complete write up on about Dr. Lamm's protocol on webcafe and was surprised to see that even in 1999 he was treating a solitary papillary tumor that appears low grade with one instillation of a chemo agent shortly after resection. None of my prior urologists did that after my low grade papillary resections. I am sure that is one reason I have had so many recurrences. Seeding from the resection but no chemo agent to kill those floating cancer cells. I have now set a laser date for removal of the papillary tumor we have been watching for a year and a half. This time by laser and probably a chemo instillation shortly afterward. I have set it for September 19th. I am ready to learn and possibly tell others of a way to avoid recurrences and a safe way to get good margins without the threat of scarring and closing off the ureter orifice if the bladder tumor, is like mine, close to the ureter. http://blcwebcafe.org/drlammsprotocol.asp Rosie

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12 years 8 months ago #6810 by wendy

I am satisfied to err on the side of caution. Not knowing the extent of damage repeated BCG treatments can cause, I feel good that past cysto's have been negative. I am hoping that a clean poke and peek next month will be sufficent evidence to discontinue the BCG regiment for at least 3 months. As for my prostate, the last PSA done was elevated to a 4.0 plus.


Hi and welcome,

As you saw from the responses, some people are surprised that BCG was offered for a low grade tumor, but I suspect that the size of 5cm was the dr's rationale as the guidelines would put anything over 3cm in a slightly higher risk category. There is a difference between risk of recurrence vs. risk of progression. As your risk of progression is very low, the doctor figured BCG would lower your risk of recurrence. Some would say overkill, others not.

If you are happy with your doctor's decision to err on the side of caution, then that's a good reason to have the treatments. But I do wonder about the necessity of maintenance therapy, the extra 3 doses every 3 months (which may go on for years, Dr. Lamm's maintenance protocol can be found here http://blcwebcafe.org/drlammsprotocol.asp ).

In Europe-which is historically less aggressive regarding BCG maintenance therapy, maintenance is reserved for CIS (carcinoma in situ, an aggressive type of 'flat' tumor), because that is a high risk for progression. Extenden maintenance schedules have been shown to increase survival in these cases, but not for low grade tumors. In the case of maintenance BCG for a low grade, single tumor of 5cm, most doctors would call this overkill, I'm pretty sure.

About the PSA levels, that could be a side effect, I sure hope so!
From Webcafe's page on BCG:
BCG and PSA
A study published in the November 2000 issue of the Journal of Urology showed that used of BCG can raise PSA (prostate specific antigen), and that intravesical BCG therapy is associated with significantly elevated PSA in up to 40% of cases. The authors state: "This effect is self-limited and PSA reverts to normal in 3 months. Therefore, we suggest that prostate biopsy be withheld in such patients and PSA monitored." 13 2003: "Endovesical BCG administration produces an increase on serum PSA levels. This variation is higher in patients with history of TURP." 15

A very interesting tool for calculating risk of recurrence and progression, can be downloaded free:
http://www.eortc.be/tools/bladdercalculator/default.htm

I ran your diagnosis by it and your probability for progression was almost none.

Best,
Wendy

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12 years 8 months ago #6802 by tommyt
Thank you all for the input. It does seem a bit of an aggressive approach, but my doc is the most respected uro in a city with a quite large medical center and a Texas Tech medical school. Although it has been not the best of my days, I am satisfied to err on the side of caution. Not knowing the extent of damage repeated BCG treatments can cause, I feel good that past cysto's have been negative. I am hoping that a clean poke and peek next month will be sufficent evidence to discontinue the BCG regiment for at least 3 months. As for my prostate, the last PSA done was elevated to a 4.0 plus. That, however, was in Sept 06' and as I stated earlier, it was not as important as the for sure bladder cancer. Hopefully, I will learn more of the prostate condition when BC treatments cease. I still have it in my mind that prostate cancer is a real possibility. Please give any feed back that would help. Thanks again to you all, and hoping your own troubles are easing.

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12 years 8 months ago #6800 by Patricia
Tommy...just wondering...have they done a serum PSA to detect any problems with the prostate? Pat

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