Thank you Sara, for the prompt and sage reply!
Unfortunately, I allowed my Medicare to lapse in favor of the VA. I suspect you are correct in ileal conduit being the only VA option, as Dr. Levy (of UCLA) did not mention other methods. I also suspect this is Dr. Levy's first radical cystectomy. She seemed very eager to steer me in that direction. What about the diverticulum involvement? She seemed to say this is the reason BCG is not indicated.
If I went to USC for s second opinion, might they accept me into the study and make it more affordable? I am not wealthy, but neither am I indigent.
Phil, is there any way that you can get a second opinion? You are geographically close to USC which has one of the best bladder cancer centers in the country. I know that the VA has some "rules." Are you on Medicare?
BCG is often very successful in treating CIS. That is what I had and I did the BCG route and have been cancer-free now for six years. I do understand that there may be complicating factors, but that is why you really need a second opinion at a place that sees LOTS of bladder cancer. A radical cystectomy can be live-saving if necessary, but there are surely other options to explore at this point.
Did they say why the ileal conduit is recomnended? There are three general types of diversions and this is the simplest. My bet is that this is the only one they do at this facility. IF this is the best choice (ie, radical cystectomy) you want it done by a surgeon who does MANY of these a year.
Please see if you can get referred to USC for a second opinion!!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Hello fellow sojourners,
Phil Cowan here, age 72, diagnosed November 20, 2014 with High grade CIS wihout muscle invasion. I am a VA Los Angeles patient under the care of a chief resident urology surgeon. After a TURBT, I waited 10 days for the pathology report. Then I was given three treatment options:
1. BCG vesico-infusion therapy.
2. Systemic Chemo & radiation therapy
3. Radical cystectomy
The chief resident said I am not a candidate for BCG because the tumor was partly in a posterior bladder diverticulum. She said Chemo and radiation were not advised for the same reason, leaving #3, Radical cystectomy with ileal bladder urinary diversion. The attending urologist was not present in the interview.
I signed the consent, but have since had second thoughts. A retired urologist "friend or a friend" said surgery should always be the last option and wondered why I had not spoken to the attending urologist. He said an IVP should be performed and ureteral catheterization.
I cancelled the pre-op appointment. I have an appointment with the chief resident next Friday and the attending urologist will be present. I feel as if I am being rushed toward radical cystectomy for reasons I do not understand.
What should I ask them?