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Bladder cancer it is...

2 years 9 months ago #50756 by sara.anne
I highly recommend the "bourbon conference." You won't know much until the path results are back, so all you can do is fret and worry. Did you notice I didn't say "don't worry?" You can't help it, but the odds are great that it will be very treatable.

Wishing you the very best....

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 years 9 months ago #50755 by jroza1
A few friends have told me similar things - I guess the real issue is that I was given a diagnosis "Cancer" and really while I know it's true that I have it, until I go through a TURBT, there are no details or information on what kind, type, seriousness, or any hard facts. I temper my own freakouts on the size - small (8mm) versus some of the advanced cases I have read about being stage 1 or 2 having much larger tumors (2CM+) and then you read about a few cases where tumors my size have been much more involved than thought, so maybe there isn't a rule of thumb...

So last night over a very nice Bourbon - I have decided that until Pathology comes back, everything is meaningless. Because I figure thinking about 'what ifs' is a terrible state. I have gone so far as to control the knowledge of my illness and have only informed kids, wife, brother, 2 or 3 friends, and my wife's parents simply because there is no information on my illness yet. Maybe I'm being silly, but I think it's just too difficult to have a conversation like "I have cancer, but I have no idea what kind, how involved, aggressive or non... All I know it's in my bladder and in 45 minutes will be fully removed (to quote my doctor...)"

I have so many mixed feelings and survivor guilt issues on this -

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2 years 9 months ago #50752 by jimswife
Josh, as Alan said, sorry you had to join us here but glad you found us. If you look in the headers of this site there are a number of good references you can use. But, don't overwhelm yourself with all the stats. I know when I first started checking things I about went mad with the numbers and fear set in. Be informed but knowledgeable and don't be overwhelmed. Come here for support and hopefully be able to have your questions answered. Best to you on your journey.
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2 years 9 months ago #50733 by Alan
Most tumors don't grow that fast so you have some time and it sounds like it is low grade. If you have any doubt get a second opinion at a teaching hospital or bladder center that does a lot of BC, a specialty. So many see mostly prostate issues. For me living in Texas it is MD Anderson. While none of us are doctors I would assume such a small tumor hasn't invaded very far.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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2 years 9 months ago #50729 by jroza1
Where can I find good information on the ratings and types of cell growths? I was told that this is likely a slow growth and "99% certain this is something surface..." but Now I guess I am growing more concerned since it's in a place where they are unlikely to be able to stage it correctly because the ridged scope can't cut it away neatly. There looks to be no Lymph involvement from the CT scan and my white cell count is in the middle range - so from the outside if this is something aggressive, my body certainly isn't showing it.

It has been about a year or so since I have had to continuously pee in the middle of the night if I had any liquid around dinnertime or later and the first sight of blood appeared in December. I guess I will have to wait for the 7th to see how much it grew in 3 weeks, combined with what ever samples they can cut off. I was hoping that given it's relative size that it would be non-invasive into the muscle.

Josh

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2 years 9 months ago #50728 by Alan
Welcome but, sorry you joined us! My tumor was small-.5CM. I don't know the differences in procedures however, I'd tell you to wait for the pathology report for the grade before you have to decide the next step. Low grade likely a "wait and watch" high grade likely BCG. All of this is doable. For most it is the irritation to the urethra on the scopes. I pee razor blades for a few voids but it passes. It consider a nuisance anymore being 8 years out. I am sure you will do well as the "early detection" is a key.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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