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After Having the tumor removed

9 years 9 months ago #32311 by dpoe
I will call tomorrow to Cleveland Clinic. Has anyone ever been there? I have this fear of these large large hospitals. Also, according to some people this is very treatable. Are you saying it is or isn't very treatable?
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9 years 9 months ago #32310 by New Diag 7
Hello ..
First off...please take a very deep breath and exhale slowly.
As Mike, Pat, George and others have pointed out...the BEST doctors who have done the greatest numbers of RC's are where you want to be. No one here is attempting to place additional stress or pressure on you. However, there is little to no margin of error when it comes to human life. I know this as a nurse, and the people here reinforced that in me when my husband was recently diagnosed. It is very overwhelming. We all have felt the same and still infact have our own fears. We all know you are very frightened. When you regain control, slowly and methodically think out all of your options. You don't have to go to Cleveland alone. I bet you have at least one or two people in your life that would gladly go with you to Cleveland for a second opinion. But you have to ask for people's assistance right now. A second so critical. Treat your body like a most precious GEM. I am sure you have people who love you very much and want you around for years to come. Do this for yourself and do this for them. You don't have to commit to any thing, or anyone, until you have all the cards in your favor. However, you first must have all the cards in hand... before you can begin. I don't personally believe seeing only one doctor has provided you with the cards you need to help give your life what your life deserves!
You are in my prayers..
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9 years 9 months ago #32308 by Patricia
Bpoe...go over to page 7 and see the big bold blue print where i posted the links to 2 doctors, one of them you mentioned..hit those with the little arrow..and it will take you right to the pages of 2 doctors who could give you a second opinion at U. of Pittsburg.
If you do not want to travel at all at least ask your uro if he would send your slides to either the Cleveland Clinic or Johns Hopkins for a second opinion. If he doesn't want to do that I just don't know what to tell you. Most doctors will confirm their pathologists diagnosis with a top pathology hospital...some without you even having to ask.
And now i'm going to take a nerve pill
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9 years 9 months ago #32307 by dpoe
He told me it was Grade 2 superficial, non-invasive. I have so much trust in this doctor. My brother, brother-in-law (with prostate issues for my brother-in-law), three other people I know that have been treated for bladder cancer and they all love him and have the confidence in the world with him. My btother on the other hand, didn't have insurance, when this doctor caught him, he was but on the BCC treatments or whatever they are called right away. He hasn't been back in at least a year and a half, so I doubt very much of a good prognosis for him.

I will go to another doctor, but I have a fear of going to Cleveland myself. My husband drives over the road tractor trailor.

When I left his office on Friday, I was so relieved at everything he told me and talked and talked to me about it and how it did not go into any of the muscles and everything, but now after reading all of this from all of you, I am scared to death!!!! I can't calm down at all.

I have nerve pills I'm taking, but I'm afraid they are one of the causes of this cancer. I take water pills for blood pressure and I'm afraid that might be a cause of it. I was a smoker until I was diagnosed, but have quit since and I know that that's the no. 1 cause, but a few of the people I know didn't even smoke.

I'm sure you are all getting frustrated with me, but all my life I've been a hyprochondriac and now its real!
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9 years 9 months ago #32306 by GKLINE
Sorry to be late to this party. I just followed the whole thread and I'll be blunt BIG TIME!!

Get to a Bladder Cancer Hospital! Don't Pass Go! Don't stop and try to rationalize! Take Charge of the rest of your life! You not only CAN do this.... You WILL do this or you could be Gone!

OK I'm done with the sermon on the mountain stuff, but please stop trying to "cheap out" on your own life. This IS your life. I am a pretty simple guy and this is the simple schedule of events:
1) you will have your first TURB and cancer will be found. They will remove the tumor and muscle tissue. I hope they get it all.
2) You will have a Second TURB and they will cut out more muscle tissue and we will all pray that the pathology finds "clear tissue" (this is our theme song) then you are cancer free!
or 3) You will be told that you need a Radical Cystectomy as the cancer is still there. This means you will have your bladder removed and a new system will be installed.

You need to move at a brisk pace! Each step you will take will immediately send you to the next step. Each time I woke from the anesthesia I was informed of "the next step"

Ok dpoe! the information is in your hands! take charge of your life and get going! 100 miles is nothing! Get there... No excuses!

sorry if I sound like my mother... but she didn't take any crap from anybody...... even ME! :lol: :lol:

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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9 years 9 months ago #32305 by mmc
Look at the resume and see how many times you find something related to bladder cancer.

Did you get your pathology report yet?

If your pathology report shows good margins, low grade, non-invasive, and you just can't get to Cleveland, then maybe going to UPMC for a 2nd opinion/TURBT is ok.

If high grade (invasive or not) or low grade but invasive, then Cleveland Clinic without a doubt. Figure out a way to do it no matter what.

That's my opinion and I'm not a doctor. Just some guy who's had bladder cancer and done a lot of studying on this. The final decision rests with you.


Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...
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