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Afraid and needing advice

9 years 2 weeks ago #31818 by New Diag 7
Hi Pat....the page on staging was very detailed and helpful. I printed it out and placed it in my Medical Notebook Bible that goes with us everywhere. You are like a walking encyclopedia on bladder cancer. You must have spent hours if not years, researching all of this stuff. It always amazes me how there are people in this world who receive little to no recognition, yet spend their lives helping others. I must say that you all have given me enough food for thought so that I have not gone into this totally in the dark.

Mike...I did the same thing as you did with regard to the CT scan. I put the CD on my computer and sat for hours looking at each scan. My husband actually saw what he thought to be the funny large alien in his bladder before we ever had the results back from Radiology.

I am grateful to have a list of test I need to ask for once the pathology report comes back. I just can't sleep thinking the focus could be in one area while no one is looking elsewhere. I am confident you all know what I mean.
I suppose this is where the SECOND opinion will come in. Isn't that correct Bladder Cancer Police? :-)

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9 years 2 weeks ago - 9 years 2 weeks ago #31817 by mmc
Yes, it was local uro with 30 years experience...


...very nice guy. Liked him alot. He told me to get to a top cancer center. I sure am glad he did that and I sure am glad he was wrong about my kidneys! :)

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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9 years 2 weeks ago #31816 by Patricia
who was that bozo who told you you had kidney cancer anyway..ok don't mention names....this is why we get second opinions right?
I remember that first post.
Pat

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9 years 2 weeks ago #31815 by mmc
I had the head to toe CT/PET. Scared the bejesus out of me when I reviewed the CD. They inject radiation into the vein and then put you slowly back and forth through the scanner.

Cancer cells light up. My entire brain, bladder, kidneys and urinary tract could have lit an airport runway.

Turns out, that isn't anything to worry about because the radioactive material gets passed from the body through the urinary tract and the action of the brain makes it light up.

Since, at the time, I had been told that both my kidneys had bladder cancer, I thought it was confirmation...but it wasn't.

That test is no good for checking those areas.

I guess I deserved the scare for being silly enough to try to read the scans on my computer instead of just waiting the 24 hours to get the report. They did find some mass in my thyroid but that just turned out to be a benign cyst.

So....if they do order one, I suggest waiting for the report. It does look pretty cool though! :)

As Pat said, they may not order one and even if they do, it may not be the whole body.

Mike

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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9 years 2 weeks ago #31814 by Patricia
Cher..no need to do the entire body...thats a lot of radiation. He might want to order a bone scan. That is the only other test i had besides the CT with and without contrast, ekg, blood work. Positron Emission Tomography (PET) and Computerized Tomography (CT) are both standard imaging tools that allow physicians to pinpoint the location of cancer within the body before making treatment recommendations.

The highly sensitive PET scan detects the metabolic signal of actively growing cancer cells in the body and the CT scan provides a detailed picture of the internal anatomy that reveals the location, size and shape of abnormal cancerous growths.

Alone, each imaging test has particular benefits and limitations but when the results of PET and CT scans are "fused" together, the combined image provides complete information on cancer location and metabolism.

The bottom line is that you can have both scans - PET and CT - done at the same time but like i said not all institutions have the CT/PET and really you do not need head to toe imaging.
I just had a CT/PET .. my first in 7 l/2 yrs as they were trying to determine if i had a stomal hernia, pulled a muscle, had a dissection or whatever i did.......it was completely normal..and only focused on the pelvic/stomal area. So its still a mystery to me but it seems to be healing so my guess is i tore a muscle or some of the scar tissue which you ineveitably get with cystecomy is playing havic with my stoma...but at least we know its not cancer.
Pat

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9 years 2 weeks ago #31813 by mmc
Cher,

I forgot about the scan he already had. Moffit may order the CT/PET since he's had the others done already.

I doubt they would do those over. As long as you get them on CD to bring with you, it should be what they need.

Mike

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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