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newly diagnosed, freaked out

7 years 5 months ago #45221 by sara.anne
Strange that we all seem to be giving you the same advice!! When faced with a diagnosis such as yours, it is important to get a second opinion at a place that specializes in bladder cancer. Many urologist see mostly prostate patients, and you want someone who REALLY knows that they are doing.

Was this your first TURB? Often it is considered good medical practice to do a second one to ascertain whether there is any muscle involvement. If that were the case, they might want to do some chemotherapy prior to surgery.

There are also three general options on diversions after surgery, and you will want to explore these in detail with someone who can really discuss them, not just someone who will push the one he/she tends to use.

Please let us know where you are located and where you are being treated. It is very possible that one of our other members can suggest options for you as far as second opinions go. The very best outcome of a second opinion is that you discover that your current urologist is "right on" and you are getting the very best treatment. The second best outcome is that you discover, if you aren't in the best place, one that IS.

Please feel free to ask questions....we try to help.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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7 years 5 months ago #45216 by GKLINE
So sorry to welcome you to our club.
If I got that diagnosis and the Dr. thought my bladder needed to come out...... Get it out.

There are nerve sparing procedures so you can maintain sexual activity after a period of recovery. And there are different types of diversion to choose from. There will be changes in your life from now on, but you will be cancer free. Aggressive attack is the only way to approach this thing. If this type of cancer gets out of the bladder, it is a tough road. And bladder cancer has a nasty way of coming back.

So please follow your Dr. advice. If he is at a Major cancer care hospital.... He'll advise you correctly. If he is not.... Get to a Major cancer care center.

There are people here who can point you in the right direction if they know where you are.
Keep us in the loop and we will try to help calm your fears, give you a shoulder to lean on, listen to your rants..... And generally tag along on your journey. If you really want to know.... we can be a Royal Pain in the ass. But our mission is to get you thru it and then you can be one of us.....


Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]

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7 years 5 months ago #45206 by DougG
Welcome to the forum, bgeist. Removal of the bladder with a diagnosis of T2 bladder cancer gives you the best survival rate. A second opinion by a doctor who specializes in bladder cancer is recommended. Please post the area of the country that you live in so that others on the forum can recommend where is best to go.

Are you a baseball player? Baseball is Doug's favorite sport and the Braves are his favorite team.


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7 years 5 months ago #45201 by bgeist
Just got back from urologist removing my catheter after TURBT 2 days ago...says I have T2, and suggests removal of bladder....is this typical with this diagnosis, or are there alternatives to try before what seems to be something so radical?

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