I suspect that the reason you are not finding posts related to your condition is that it is not a common one. And any time someone is faced with such a diagnosis the advice is just what Alan suggested, a second opinion. If at all possible you should seek a consultation at a major center for the treatment of bladder cancer ASAP. Such a site would be a National Cancer Institute designated center or a major university medical center such as MD Anderson, Johns-Hopkins, USC, Stanford, Sloan-Kettering....
A lot of people live normal lives with just one kidney, but this is not a decision that should be taken lightly and you want to have all the facts and options available.
Good luck to you
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
I am sorry for your report not being a good one. I have no experience in your situation. However, I did tell myself if something arises like you are describing I would seek out the best bladder/urinary system hospital that you can get to. They simply have the experience and have many are on the "cutting" edge of science.
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.
Dear Forum Members, I have been receiving treatment for bladder cancer for about two years. I have gone through 2 TURBTs where and 7 BCG infusions. My bladder has responded positively to these treatments and my bladder is presently tumor free.
Recently, I had an MRI where a thickening of the ureter wall was found. After a ureteroscopy, a tumor was identified. My doctor took out a tissue sample and pathology will determine if the tumor is low grade or high grade at this point.
If it's a high grade tumor, my urologist is recommending that my left ureter and kidney should be removed. I don't believe this is a typical bladder cancer progression. Am I correct? QUESTIONS: Is this something unrelated to bladder cancer? Perhaps, ureter cancer is just considered separate from bladder cancer (independent in itself)? Has anyone out there experience this?
If it's low grade tumor, my urologist is recommending a series of ureteroscopies to remove the tumor and to "keep an eye" on the ureter for possible future tumors. Moreover, a stent is to be inserted to keep the ureter from closing. Also, my urologist is asking me to consider just removing the left ureter and kidney, in order to avoid the ureteroscopies procedures and prevent the possibility of future tumors which may be high grade ones.
I have not found a lot of information about tumors in the ureter from bladder cancer on this forum by doing a simple search. That is why I believe this is not a typical bladder cancer progression. Am I doing the search incorrectly? Does anyone here have experience with this ureter tumor issue?