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4 days 15 hours ago #59517 by KoalaGuy
Thank you Alan. This is incredibly helpful!

--Jerry

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5 days 2 hours ago - 5 days 1 hour ago #59513 by Alan
KoalaGuy,

I am attaching a long file that I copied years ago when I first confronted cancer. There are too many questions. Just pick and choose what fits you.

Plus, here is a link on the different types of diversions with pros and cons. Just copy and paste it: https://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion . The important thing is to pick a surgeon that does many of whatever you choose (25-35+ a year). Some will simply steer you to what they know how to do, you are in charge here so pick a surgeon you are comfortable with. By the way, most people are comfortable with whatever they have chosen.

Ask away as you have other questions.

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.
Attachments:

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5 days 11 hours ago #59512 by KoalaGuy
Thank you Sara Anne. Your writing voice itself makes me feel calmer. And great advice!

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5 days 12 hours ago #59511 by sara.anne
Sorry to hear your diagnosis, but welcome to our “exclusive “ club!

First, if you haven’t already, be sure to get a copy of your pathology report and begin to keep a file of ALL your medical records. You may very well may want to refer to them in the future.

I assume that your urologist is advising a radical cystectomy with chemo prior and that is why the referral to an oncologist? You will want to know exactly what type of chemo they are recommending and what the alternatives might be as well as the time-frame.
Be sure to take notes and, if it is possible, have someone come with you to take notes. We are not always able to remember what we hear when we are under stress!

After you have had a day or so to digest all of what you have heard you will need to decide whether to go with the recommendations that have been made or to seek a second opinion at a place that treats lots of bladder cancer patients such as a medical school urology department or a National Cancer Institute designated cancer center. Yes, this is something that does need to be taken care of relatively soon, but you do have time to obtain all the information that you need in order to make an informed decision. Not everyone needs a second opinion but you must be sure that you are comfortable with the option(s) presented to you.

Wishing you all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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5 days 12 hours ago #59510 by KoalaGuy
I’m 70 yrs old with a wife and daughter living in Arkansas. I run our chamber of commerce. In 1973 I got to hold a Koala bear, thus my nickname.

My urologist did the tumor removal last week and said I was Stage 2. See oncologist for first time tomorrow.

What should I be asking?

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