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Afraid and needing advice

10 years 3 weeks ago #31812 by New Diag 7
Hi Pat & Mike...
Good information. Thanks again.
In answer to Mike's, I am not all upset by what you are telling me. The more information I have time to digest..the better equipped I am to go forward and seek the right specialist.

My husband did have a CT scan of his kidneys and bladder prior to them doing the cystoscopy and TURBT. They did with and without contrast. He also had a chest x-ray and EKG..of course that done more so as a routine for pre-op.

Are you both speaking of him now having an additional CT.
I do know the PET is more extensive, showing the entire body. I have asked Dr. Root to do the PET already. His response was.."he did that already"...but he did not. He only did a scan of pelvis and abdominal cavity. I would like to see the entire body.

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10 years 3 weeks ago #31811 by Patricia is a good page on staging..

Now having shared that I have also found that with men many times it has spread to the prostate and actually not found until cystectomy. If it is contained and not anywhere outside the bladder or prostate projections are better at survival especially at a top bladder cancer facility.
Many times they do not do a CT/Pet due to denial by insurance...most probable scenario...or the hospital does not have the machine. ... Very expensive and most hospitals now rent out a space to a facility that only does CT/Pets...Long explanation made short..the dye used is only viable for a short period of time.
Please do not panic at this time. Your hospital will have the slides..not your just call them and medical records and tell them when you need the slides and CT scan on disc and all medical records and then just go in and sign for them. Leave the uro out of the equation. Hand carry them to Moffitt. I find if they are sent they never seem to get to the right desk at least not in a timely fashion. When i went to MSK they specifically asked me to hand carry.

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10 years 3 weeks ago #31807 by mmc

Good for you! That's the right attitude. Most likely, they will call for an abdominal CT scan and chest xray first. If they already see things with that, they may just start treatment. If they don't see anything on that, then you should push harder for the CT/PET scan. That's head to toe and they superimpose the CT image with the PET scan. I think they don't go straight to CT/PET because of the expense.

My local uro ordered them in that order when I had a recurrence. Nothing could be seen in my case (even with a cysto) but the cytology (urine test) came back positive for high grade cancer cells. Thankfully, nothing showed on any of them and I was simply able to get my bladder and prostate removed and the cancer has remained gone since. Mine was only T2 though and it was barely T2.

Most likely, your husband is going to require some form of chemo even if they don't find anything in the scans as T4 increases the chance that it can get elsewhere. It depends on the doctor, as some like to do the chemo before and others like to do it after the radical cystectomy. Given that it has spread (as long as it's not spread other places) to the prostate, its highly likely that he's going to need a radical cystoprostatectomy (removal of bladder and prostate).

I hope you are OK with me telling you this kind of stuff. My style is to be pretty up front with likely scenarios as it is usually better to be prepared and have an understanding of probable next steps so you know what to study up on.

You may want to start posting any follow up questions in the "Invasive" section of the forum and also reading up on some of the posts there.

When you are reading, you may find some people calling T4 metastatic. It is not. T4 is spread to the surrounding areas. Metastatic is sometimes called distant spread and it is indicated by lymph node, lung, bones, or brain involvement.

We're all hoping it isn't metastatic and at this point there is not enough information to make that determination. There is a thing called micromets though (too small to see with today's technology) so even if nothing shows up on scans, they will likely want to do the chemo to kill off possible micromets.

Wishing all the best for the both of 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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10 years 3 weeks ago #31802 by New Diag 7
Thanks Anita........I will try to join in chat if I can figure how to get there. Your good wishes...make us smile. I meant to is your husband doing?

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10 years 3 weeks ago #31801 by New Diag 7
Hi Mike...
Thank you for your note. Please don't think it was anything that you said that placed me into defensive more re: St. Joe's. I was already there because I had a friend in that hospital 8 yrs prior...and was not impressed. It obviously had changed drastically because the care was veyr good this time. Thank God!

I will do as you say and will make certain to have the slides as well. I guess the urologist will have all of that being I don't know who the pathologist is yet.

I want my husband to have a PET scan, but no one has mentioned that as of yet...except ME to the urologist. He seemed to blow that idea off for now...but I surely won't! Your thoughts..and any further words of wisdom are appreciated. I am like a sponge and am taking notes on everything. We have to win this battle........I won't accept another alternative but to WIN!


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10 years 3 weeks ago #31799 by DougG

Ten kids in 48 hours!!! What a woman. Glad you've made it through this hurdle. Know you are glad to be home where you can close your eyes for a minute or two. Hang in there and join us on the chat Sunday evening at 8 PM if you get a chance.

Anita (Doug's wife)

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