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?
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.
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
Sorry to hear about your case. As Sara and Alan has suggested you will not find posts relevant to your case because 5 to 10% of people with BC develop upper UT malignancy.
With that being said you should never loose hope and seek medical consultancy with the best medical hospitals.
God willing you will get better soon
Sorry to hear your situation and wish best. 4+ years T1 Hi-grade... 3 turbts and about 50 infusions now 1st BCG failed that then moved to GEMZAR which knock on wood. My original tumor was located at my left ureter entering bladder requiring a stent emplacement for couple months until healed. My concern was spreading back to kidney so am following this subject closely. My Urologist runs my care and is good yet I have a question.... when/why/how would I go about getting preventative scans and on what organs to see if spreading. Seems all being watched in my bladder and that concerns me. Lots blood work but never images. So that's my story of having a very aggressive 7mm tumor on ureter with another lower in bladder then 2 times returned in other areas and I am doing pretty good right now..... well old fat lazy and all but ok besides that.
Ureter Cancer is frequently called Upper Tract Urothelial Carcinoma or UTUC. Using all three terms on google will provide many responses.
One recent drug approval for Low Grade Upper Tract Urothelial Carcinoma (LGUTUC) is "Gelmyto", a form of Gemcitabine.
I have had only one kidney since the 60s, thus there has been concern about the possibility of UTUC ever since the bladder cancer diagnosis; thus my interest in UTUC.
Not all ureteral cancers are from the bladder, as you have suspected. Independently, after bladder cancer was diagnosed I was found to have an unrelated Renal Cell Cancer in my one and only kidney. That cancer was described as having the potential to spread downstream to the ureter and bladder. Fortunately, the kidney cancer was successfully (so far) removed.
Maybe it is just me, and my situation, but I would want additional opinions and thoughts on how to address the ureter tumor problem before considering losing a kidney. Reliable sources on google (Cancer Society, well know major medical institutions, etc) will offer possibilities to discuss with your care team about ureter treatment.
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021