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Newly diagnosed and overwhelmed

2 years 6 months ago #53781 by sara.anne
So sorry that you find yourself here....and you do have a lot facing you in the near future! You are very fortunate that you are in a place where you have an "abundance of riches" in the treatment of bladder cancer, however.

First, please remember that if the cancer has not spread beyond the bladder, radical cystectomy (removal of the bladder) is a definite CURE. And many people live full lives without a bladder.

I have not had to face the decisions that you are going to be making, but there is always the thought that someday I might have to, so I have sort of figured out what I might do in your situation. But these are very personal decisions.

Most patients do have the bladder removed; radiation treatment has not always been successful and can lead to surgical complications later if it becomes necessary to remove the bladder later. It is somewhat controversial and is often considered experimental.

As you have probably read, there are three major types of urinary diversions if your bladder is removed. A really good summary of these can be found
https://my.clevelandclinic.org/health/articles/urinary-reconstruction-and-diversion

Neobladders have not been as successful with women as they are with men, and a good percentage of women who have had them are either incontinent or super-continent and have to cath. This is also the most complex surgery. Our president, Cynthia, has an Indiana pouch and is very happy with it. I am sure that she will probably post here tomorrow. The simplest, of course, is the ileal conduit where urine is collected in a bag outside the body.

Whichever diversion people have, they seem to adapt and live comfortably with it. You want to be sure that whichever you might chose you have a surgeon who is familiar with that diversion and who is experienced in the surgery required.

If you feel that you need a second opinion, Stanford University Medical center is also a great place for bladder cancer treatment.

Please feel free to ask any questions you might have, and someone will be sure to respond! Remember that we are not doctors, but rather people who have been facing bladder cancer head-on!

Best of luck to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 years 6 months ago #53780 by chaismom
I was diagnosed with bladder cancer on 6/13 and have since undergone TURBT and found that the tumors (one large-ish and several small) had invaded the muscle. CT scan seems to indicate that it has not gone further, though another has been ordered to confirm. My oncologist is Max Meng at UCSF. He's going to do a second TURBT on the 14th of August. I need to make a decision re: chemo followed by bladder removal and/or neo bladder and chemo/radiation/chemo and then keeping my bladder and repeating the scope (and possibly the TURBT) every 3 months. I'm 67, female, heavy and not in great shape. How do people make this decision? I'm overwhelmed. Not a whole lot to be found for neo bladder in women (recent). And keeping my bladder seems like it could come with a 50% that I'll lose it later on (if I'm understanding it correctly). I need information on the pros and cons of each choice. I should also say that, while I have a great support system, I live alone and while my daughters and sibs are more than supportive the daughters are both pregnant and don't live that close to me (90 minutes and 3 hrs respectively) and my sibs are an hour or so away. UCSF - where I will get treatment- is nearly 2 hrs from home. I am also still working full-time. Yikes! Any input would be greatly appreciated.

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