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Afraid and needing advice

10 years 8 months ago - 10 years 8 months ago #31906 by New Diag 7
Thank you Mike...that all makes sense.
I have now reached too many pages here (13 pages) and we are no longer that new of diagnosis. From now on, I will move any post I make over to the "Invasive" forum. You have all been more than I could have asked for in times like this. I thank you a million times over.

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10 years 8 months ago #31905 by mmc

given the extent and stage of the cancer, the probability that it would return quicky and further metastasize is extremely high. Getting it out now reduces the chances.

With regard to impotence, no more baby making, it will be dry orgasms but orgasms nonetheless. The erection part is the issue. If possible, he needs to get nerve sparing surgery when they remove the prostate. Depending on where the cancer spread to the prostate they may not be able to do nerve sparing. Even with nerve sparing it can take from a couple months to a few years to know if it worked.

There are other things that can be done (pills, shot) but cross that bridge in time.

Let's just see what they find during surgery and we will go from there.


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 8 months ago #31903 by sara.anne
Oh boy, Cher. What a roller coaster. I think that the comments on "he doesn't do prostates" means that he specializes in bladder cancer, not primary prostate cancer. As has been pointed out, in males when the bladder goes so does the prostate!! And, I would agree that your uro's advice to seek a second opinion is a sign of a good doctor. When I discussed second opinions with my uro, he told me that if we ever face bladder removal (not there yet, thank goodness) he would REQUIRE that I get a second opinion.

I think you will be in good hand with either doctor at Mofitt...and am so glad that you were able to get seen there so quickly...and that you found us...and that WE found you!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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10 years 8 months ago #31900 by Patricia
Yeah thats a logical question to ask if they think they got all the tumor.....problem is, what they can't see. A CT scan may or may not show enlarged nodes. Once it hits the second muscle one can only hope it is contained and has not spread. Often that is not known until cystectomy and node removal and the more nodes the better. They should also do a bone scan, chest x-ray, and blood work.
The environment is right for it to reseed and come back and right now the best chance is removal.
I'm kind of facing that challange in another area right now having a second primary of breast cancer...extremely small and surgery was successful in getting it all plus margins but the bugger had made it to one node...not playing fair. And i've heard of women who have had both breasts removed and the cancer came back...??? How could that be possible.
They just don't know......so ya just gotta go with the best odds out there right now.

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10 years 8 months ago #31897 by New Diag 7
Thank you George Nancy, Mike..and others. Again, my appreciation for your being here, are more than woprds can express. George your post made a lot of sense..and I will remember those words.

I now have two appointments on the books. One with Dr Sexton and one with Dr Lockhart. Both affiliated with Moffit Cancer Center. My husband recently asked me a few questions. I did not know how to answer him. He wanted to know if the doctor said he got it all, wouldn't they run a scan or imaging test now.....to see if it was all gone? Why do they suggest doing such radical surgery on someone if they appear to be cancer free after removal of tumor? Is there no way to determine all the cancer is gone, short of taking out the entire bladder?

I am hoping to get him on to this forum soon. I think it would do him good.


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10 years 8 months ago #31895 by GKLINE
It appears as though you are "in the Groove" Your timeline is exactly the same as mine(and most others here). Once the cancer has been identified and rated, they are on a very similar track to our cure.

I was concerned with the "speed" of the program when I was first diagnosed, but with time, I realized that speed was necessary. I also Liked the way your uro was opting for a second opinion. That show you he is willing to hand off the decision to a better qualified and busier bladder cancer Dr.

I have said this before, but it bears repeating. You are not looking for the most creative surgeon.... You are looking for an assembly line worker (has done a LOT of this surgery and has seen everything that can happen) The Number of Bladder and Prostate removals is important.

I know it does no good to say "Been there and done that" but we have come out the other side and are living proof that we are still living! It appears as though you are in good hands and going forward. My wife would know exactly how you feel Right Now! She was the "keeper of the Record" just like you. Don't let this all overwhelm you. As far as I can see you are on the path to the cure. Pat and Mike have steered you in the right direction and soon you will be talking about the Radical Cystectomy surgery. It will save your husbands life.... It did ours.


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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