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Confused, scared, to many decisions to make

12 years 3 months ago #15582 by timb
George

I have to echo the above. I had my bladder removed Oct 06 and my life's pretty good. I also vary my percentages but it's absoloutely in the upper 90s. And I wouldn't have believed it before I had the op either.

Tim

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12 years 3 months ago #15578 by Zachary
George, we're exactly the same age. I was diagnosed with invasive BC almost two years ago, and had surgery at age 49.

If, indeed, yours is invasive, your search for the needle should stop and you should seriously consult with doctors at a major cancer center that sees lots of bladder cancer patients. Chemo will not "kill it".

I'm gong to PM you my cell number, and please call me if I can help answer any real-time questions you have, or to allay any fears you might have. With my new bladder my life is 98 percent just as it was before surgery (the percentage changes every time I say this, so you might well find another thread where I said it was 99 percent, but you get the idea).

I am so fearful of the surgury and life afterwards I just don't know what to do. Is it worth the risk not having the bladder removed?


May I be blunt? No way, no how, not even an option. If you have invasive bladder cancer and decide to fiddle while Rome burns, it will spread and spread and your options will then be nil. Right now you have time to nip it in the bud--waiting will give it an opportunity to leave your bladder and visit other organs that you really don't want visited.

And when it's all said and done, it's not nearly as bad as you're imagining it will be. That I can also guarantee.

Please call if I can help you.

Zach


"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

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12 years 3 months ago #15577 by Patricia
George there should have been enough of a sample for a pathology report when you went in for your TURB.....ask to see that. If it truly is outside the bladder then you are at a high stage. My advise is to seek another opinion once you finish this round of chemo with a top uro/oncologist/surgeon at a top facility. Bladder preservation is probably not an option as they will not take anyone into that program above a Stage 2.
There are many men on this site younger and older than you who have a neobladder and are quite happy with the results.
Please let us know where you are and what the pathology says.
Pat

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12 years 3 months ago #15575 by momof4
Hi George,

Where are you being treated? I want to start there if that is ok. Are you in the USA?

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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12 years 3 months ago #15574 by Rosemary
George,

I have non-invasive Bladder Cancer so, I wont' be a whole big help. There are lots of folks here who have been where you are at and will be able to give you some of their counsel.

I would like to ask you, however, if the Dr. gave you some sort of staging of your cancer from your biopsy. I think now they are using the terms of Stage I, II, III, or IV. I am Stage II.

Hang in there.....

Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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12 years 3 months ago #15573 by GEO
I am a 51 year old male. I had been diagnosed with BC on Feb 2nd. As soon as I found out I wanted to get thru this as fast as possible. I went to the urogolist and he did a cystoscope and said I had a tumor. At that point he scheduled a biopsey and tried to remove the tumor at the same time. No luck... could not get it all. I've had ct scan which shows it is out side the bladder but does not appear to have spread to any other organs or lymph nodes. Had a bone scan which came back OK also.
Right away the Uro wanted to remove my bladder and then deal with whatever else he found upon going in. I got a little scared and went to an Oncologist and asked for his opinion. He had another pathologist read all the reports and consulted with other oncologists and recommended chemotherapy first and then get the bladder removed for obvious reasons. Everyone is telling me they can not tell how far it has spread till they do the surgury. Are their any other more definative tests that can be done to determine the stage before actually going in? I have read that usually in these situations it is usually under staged... I have started the chemo and have had 3 treatments. First one was cisplatin / gemzar. Second treatment was gemzar only. Went for the third treatment and could not get it because my blood counts were to low. Skipped that week and my off week and then went back and recieved the cisplatin / gemzar again. I have had absolutely no side effects at all. I'm actually feeling really good. I went to the oncologist and he reviewed everything and cut back the gemzar a little so I can get thru three treatments in a row hoping my blood count doesn't fall low again.
Anyhow, I'm looking for a needle in a haystack when I say this. I do not want to lose my bladder. Especially at my age. I suggested to the Oncologist that being I am not having any side effects and if I can make it thru the three rounds of chemo without any real problems, can he give me three more to try and really kill it? Is that really a viable option or am I looking for that miracle that doesn't exist? The Oncologist did say what I want to do is not the standard but he would scan me after finishing these first three rounds and then discuss the results. I am so fearful of the surgury and life afterwards I just don't know what to do. Is it worth the risk not having the bladder removed? Is there any bladder sparing treatment out there?
HELP!
Thanks,
George

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