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Newly Diagnosed

12 years 1 month ago #1722 by rugrat1956
Fred, my tumor was 5cm cubed and I think noninvasive, low grade. I'm checking on the path report. The doctor said the stalk on it was unusually thick so there was a lot of scraping and cauterizing. He did not recommend treatments at this time or any other tests so we are waiting to rescope in December. He was educated in England and Mayo Clinic and graduated first in his class. Seems to be a very intelligent guy so I am trusting him. Hope this helps you feel better. Thanks, elaine

elaine f.
dob- 1956
female- Indiana, USA
caucasian
smoked cigarettes- 1975-?
5cm-noninvasive- low grade- papillary
TURB- Sept 11,2006

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12 years 2 months ago #1620 by FRED
Thank you Rosie and Tim for your replies to my concerns. This site has been a real blessing to me and to all the others who have BC.

Fred

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12 years 2 months ago #1583 by Rosie
Fred,

If you haven’t read Wendy's post regarding European guidelines for superfical bladder cancer, it is answers many of your questions Even though I am in America and not Europe, these guidelines fit my present protocol similarly. http://blcwebcafe.org/cgi_bin/forum/nph-YaBB.pl?num=1138542311 Please do not panic and do not let anyone in medical or others involved in other type cancer treatment allow you to overreact and doubt. This forum and this website gives the best and most complete information on superficial non-invasive protocol and prognosis. My second urologist scared me something terrible about my low grade papillary to such an extent I demanded lots of extra tests, imaging, treatments. I now know he did me a disservice. Often times, low grade papillary cancer recurs but is still called a "nuisance" disease by those urologist that are very knowledgeable in the field. Other times, the grade increases and there is more treatment and/or tests. You and your doctor are just learning how your particular b/c will act.

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12 years 2 months ago #1578 by timb
Fred
Im 43. My first tumour was pretty similar to yours. About 2.5cm, non-invasive, paillary and they managed me conservatively (regular checks and removals where necessary) for 14 years up til now. My tumour last year increased in grade but my doctors still consider me unlucky. They wouldn't have CT scanned me until the last year. I have, however, had regular IVPs (every 2 or 3 years) since this disease was discovered. I don't think, personally, you need to panic. Advice above is right and your tumour has a good prognosis right now. Just keep going with the tests and checks.

best wishes

tim

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12 years 2 months ago #1577 by FRED
Rosie, thank you for your reply. My doc did do an IPV and a CT prior to surgery. How often do they recommend Ct's or MRI's to to check that cancer cells haven't landed some place else?

Fred

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12 years 2 months ago #1565 by Rosie
Fred,

The grade and stage is the important indication of the cancer not the size. Papillary can grow very large without being invasive. Six years ago, I had a 4 cm low grade papillary tumor removed yet my urologist at the time decided to do BCG treatments. I didn't have any other contrary evidence so went ahead with the treatment. These days, medical indicates that BCG is not effective and unnecessary with and initial pathology report of low grade papillary carcinoma. If the pathology report had stated invasion deeper in the bladder, there would have been cause for further imagining. Since that was not the case, there is no spread. Your doctor is following the correct protocol by monitoring it. Some doctors have patients come in every 3 months some every 6 months for low grade papillary carcinoma. Many times prior to surgery/TURB pre op tests include blood workup, chest x-ray and a CT or sonogram etc..

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