Oh my Joey, you have certainly been on a long journey. I can't imagine how "beat up" your bladder was/is from the 33 BCG. I had 10 less than you, and for a couple of years went thru a lot of pain and discomfort.
Come October, I am hoping to hear all is well with the cysto and tests.
I will be thinking of you, sending good wishes and prayers.
I am now 9 years out, still keeping my yearly cysto, because I just feel better hearing "all clean". After next year, if all is well, will probably have to go to two years.
Hi Nix, still here. I did have my left kidney and ureter removed in June 2015. Recovery went well. For a 15 month period continuous test were inclusive as some cytology showed they could not rule out high grade cancer in the renal pelvis area and ct scans would also say can't rule this out but may be due to inflammation. There was also concerns of same in the lining of the ureter where biopsy was not possible. So I had the kidney removed and the ureter had significant inflammation from the BCG treatments and the Kidney pathology was clean. However it appeared some low grade cells in the renal pelvis. I have been back for two follow up and all is good with another one coming up in October.
Joey, I am so sorry that you are going through all this. I h aven't been checking in, very often, so I was surprised when I read of your
I agree with you, getting checked every three months, and still on the fence of what to do, has to be keeping you on edge.
I would suggest a second opinion, just to remove all doubt.
I will be thinking of you, please keep me posted
Like a lot of us here you have had a long and bumpy road. Outside of getting a second opinion there is little advice anyone can give you on this one. As none scientific and illogical as this sounds there comes a time most of us face when making a decision such as this that the bottom line is what our gut tells us. As someone who has lived for years with one kidney, outside of keeping a close eye one kidney function it has not changed my life at all. What ever you do as always we will be here for you. Keep us updated please.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society