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Doc says stop trearment. Time to worry?

6 years 11 months ago #40592 by dukel
You cannot be to aggressive at getting a second opinion, or on making sure you have regular check ups. If you are not comfortable with the opinion you are getting, get another opinion! You need to have as much piece of mind as possible.
Duke

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6 years 11 months ago #40570 by sara.anne
Was it the OR doc or the urologist who said that you did not need any more treatment? And, I assume he meant BCG....due to the reaction you had, that is probably correct. However, that does NOT mean that you are through with all treatments. There are other things that can be tried. Genetic testing for bladder caner is not yet considered "ready for prime time."

The problem with bladder cancer is that it returns. It requires constant watching. Your urologist should have you on an every-three-month cystoscopy for at least two years, then every six months. You need to discuss this with the urologist.

If you are not comfortable with your current urologist, it is definitely time to get a second opinion at a place that sees a lot of bladder cancer cases. This is usually done by a urologist. Most oncologists are not familiar with bladder cancer. If you let us know where you are located, we may have
suggestions as to where you might go.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 years 11 months ago - 6 years 11 months ago #40568 by Alan
Seek a second opinion ASAP. If part of the path report is high grade then it needs to be treated as high grade-which is what your URO has done. Not to alarm you as it very well may be nothing but high fever could be a signal of the BCG going to active tuberculosis or other infection. Either way everything is treatable but, you need another set of eyes. If you are close to a major center for cancer you want one that specializes in bladder cancer. The OR doc probably has very little experience in bladder cancer much less what BCG does or can do-pro and con. Gene testing sounds good however it is done very infrequently and probably not necessary. There are others that watch this board with more experience. With the holiday weekend it may be awhile before someone else with more experience will chime in. Absolutely get the second opinion if nothing else for peace of mind. Where do you live as someone will likely have a source for you? My backup is MD Anderson in Houston as I live 3 hours from there.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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6 years 11 months ago #40567 by Pgjanssen
Diag. Stage 1 T0 N0, 80% non- aggressive 20% aggressive papillary in April 2010. Underwent turbt, and have had 12 bcg treatments. After last one was hospitalized several days for high fevers and auxiliary heart issues. Am on rifampin and inh for another month. Had clear cystoscopy recently. Before leaving OR, doc said hes been reviewing my case, says I dont need further treatment. Yay. Maybe. I say that b/c Ive been doing reading that made me wonder genetic testing for p53 or Rb had been done. Doc paused 3-4 full seconds and said that testing isnt typically done. I know these are not markers in the tecnical sense, but it seems to me they are indicators of the degree of aggressiveness of treatment necessary.
I have been treated by a urologist. Should I seek out an oncologist? Could I yet be tested genetically, or did that testing have to be done on the tumorous material? Would you advise 2nd opinion on stopping treatment? Other advice?

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