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2nd TURBT /BCG/ Surgery ?? I feel rushed!!!!!

8 years 11 months ago #34222 by pemquid
If the second TURBT still shows that the large tumor was not muscle-invasive, it's probably well-worthwhile to try the BCG. The purpose of the BCG is to(hopefully)reduce the chances of recurrence or the frequency of recurrence. It's not a questions of doing BCG and then proceeding to bladder removal. The BCG, best case scenario, can allow you to keep your bladder, if not "forever" than for as long as possible. If,even with the BCG,you have a lot of tumor recurrences or there is any sign of progression (to muscle invasive), then they would stop the BCG and RC would certainly be in order.

If the second TURBT shows evidence of muscle invasion, then BCG would not be started and bladder removal would be the way to go.

Given your weight problem and other medical issues you mention, avoiding or forestalling the need for major surgery by getting the BCG treatments would certainly be advantageous.

Ann

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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8 years 11 months ago #34219 by mamatrausch
THANK YOU THANK YOU!!!! Names and LINKS!!!
I will do research and set up Appts. It was indeed Dr.Bochner i was thinking about but it sure would be nice to be close to hoome at Unv of C and Dr Steinberg. BUT......
Sunny CA AHHHHH and thats where all my husbands family lives.
Im feeling better day by day have been scared and anxious and not sleeping. I am a reasearching type of person but I somehow need to find balance
julie

T1/G3-CIS 10-01-2010
10-27-2010-Indiana Pouch

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8 years 11 months ago #34218 by Patricia
I'd definately get my second TURB and opinion with a major bladder uro/surgeon.....Dr. Steinberg is one of those and at U. of Chicago..he is competent in all 3 diversions. He's very well known
http://www.uchospitals.edu/physicians/gary-steinberg.html
I believe you talking about Dr. Bochner at MSK
http://www.mskcc.org/prg/prg/bios/616.cfm
You have a pretty good advantage there as the pathology department is tops.
If you'd like a trip to sunny LA...i highly recommend USC/NOrris and just about anybody on staff is highly trained and in top docs in america....Dr. Inderbir Gill, Dr. Sia Daneshmand, Elia Skinner.........also tops in pathology.
And these are also what i call female friendly..know how to do all 3 diversions even though they always try to sell the neo to females..tho i think USC has some tricks up its sleeve with female neo's.
Another GReat place is Indiana University where Dr. Koch does tons of cystectomys a year as does Dr. Bihrle
http://www.urology.iupui.edu/body.cfm?id=23
take a look and set up your interviews.
If second TURB still looks non-invasive you can have your BCG done locally.......If you're looking at RC these are all great places and rank highly. If RC indicated you should not wait more than 3 months and personally i think thats pushing it.
pat

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8 years 11 months ago #34217 by mamatrausch
Pat and Sara.anne Im thinking the same I called Medical record at Hosp. I will get anthes report and see what was used.(I Think just proforol MAC ) I am a complicated case as I also have vestibular migraines and did receive gentamyicin during surg which can further disturb vestibular system.ARGGI live in the Chicago suburbs and I was contemplating going to see Dr Borcher at Sloan (not just for neo Im not sure thats best for me) Dr Steinberg at U of Chicago you mentioned I dontknow much about him. My surgeon gave me Dr Kurdu? (northwestern) and Michael McGuire at (Northshore Unv Health system) My husband just retired from fire dept so we are able to travel and relocate for extended time so I just what someone experienced but also I need to be able to communicate!!! I am overweight 5 ft 190 so I dont know if Im a good candidate for RC. Do you know about how long I would have to decide after 2nd Turbt (if no muscle involvement)before RC ? WEEKS or Months??? So I can make APPTS. Also If I choose to start BCG will that effect when I can have RC? Thank God for all you! BC is scary but you all help AHHHHH!!(sara.anne IM trying to breath!!)Julie

T1/G3-CIS 10-01-2010
10-27-2010-Indiana Pouch

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8 years 11 months ago #34214 by sara.anne
Julie, I am sorry to have to meet you this way, but you are at the right place. So many of us have "been there, done that" that we DO know how you feel.

First piece of advice...take a deep breath. Yes, there is some urgency, but NOTHING has to be done tomorrow. You do
have time to become "comfortable" ( :laugh: ) with this. Pat's advice about a second opinion is especially important in your case where there ARE two viable options. And you are fortunate that your uro does not do RC's since there will be no problem with your seeking advice elsewhere.

You can take the time to explore your options...perhaps have the second TURB at a more comprehensive bladder cancer center...and make your decision from a platform of knowledge.

Do let us know where you are located geographically, and I know that Pat can recommend some good options for a second opinion/evaluation.

Keeping good thoughts

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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8 years 11 months ago #34213 by Patricia
Hi Julie,
your symptoms are very strange..you said no bleeding but it was a deep biopsy. I would hope the Mitomycin did not get into your blood stream but that usually produces fever. Your doctor is right in wanting to do a repeat TURB in a couple of weeks..time frame is 2 to 6 weeks....just to make sure all margins are clean and no re-seeding taken place. But you might take this time to seek out a second opinion from a top class Uro/Surgeon who does do cystectomys. And yes it does sound like T1G3 according to the pathologist your doctor used.
If you'll tell me where you are located hopefully i can steer you to someone experienced.
Your reactions might be to the anesthesia used.
Pat

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