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Dad\'s looking for options

10 years 9 months ago #29052 by sara.anne
I second Pat's advice....DO GET A SECOND OPINION. And, if he
does decide on cystectomy, he should go to a place where they do many.

When I was diagnosed, my urologist welcomed second opinions and stated that if it ever came to his recomending bladder removal, he would REQUIRE that I get a second opinion.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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10 years 9 months ago #29035 by Patricia
You mentioned T1 but what grade......High? Its still not invasive at T1. 20 to 30 cystectomys a year is not many actually. Top bladder cancer specialists do 60 and up a year.
Cleveland Clinic is close and the #2 urological hospital in the country.....i would only get a second opinion from Dr. Steven Campbell
A second opinion is always valuable and should be mandatory when it comes to cancer. This is a very sneaky cancer.
Not knowing the circumstances of having the kidney removed i'm not sure what the questions should be...usually the cancer cells move upward to the kidney from bladder cancer not the other way around.

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10 years 9 months ago #29032 by amar
my dad, 58 years old, found out for the first time 2 years ago that he had bladder cancer, and kidney cancer. he had 1 kidney removed, went through chemo and 3 rounds of bcg treatments over the next 18 months, and was all clear. recently, however, the bladder cancer returned and is T1.

he is being treated at the university of michigan hospital, and his doctor, Dr. Weizer, strongly recommends that the bladder be removed asap. he said that a neo-bladder may be an option, but there is no way of knowing until he is actually in the procedure. he also says he does 20-30 bladder surgeries a year. he is the same doctor that removed the kidney also.

right now, my dad is deciding whether or not to go for another opinion. I dont know what another opinion will tell him though, since the biopsy established that it is cancer. if we do go for another opinion, it will either be the mayo clinic in MN, or MD Anderson in Houston, TX, or a hospital in Cleveland. i am wondering what anyones advice is on either getting a 2nd opinion, what place to get that 2nd opinion, and what options they faced if in a similar situation. also, what questions should we be asking and what kinds of things should we be looking for?

the 3 options that Dr Weizer has given us are, 1. possible neo-bladder, 2. right colon pouch and 3. an external bag

are there other options? we think taking the risk of trying to treat it with BCG again is too risky and may give it too much time to advance, and Dr Weizer said he would not approve of BCG anyhow.

i am new to this website and have been reading as much as i can and have found it to be the most helpful resource thus far. everyones words are very encouraging and helpful.

i am 26 (only son) and have 2 sisters near my age also, and together with our mother, we have been dealing with cancer for these 2 years with the highest hopes. as everyone knows, its so tough to deal with. so thank you anyone for any words...

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