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Hidden tumor found during surgery

6 days 22 hours ago - 6 days 22 hours ago #58317 by Knifedealer

sjhatch2024 wrote: I start my bcg next Friday [today] for 6 weeks.

Thinking of you today and wishing you only the best. I'm sure I speak for others as well.

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2 weeks 1 day ago - 2 weeks 21 hours ago #58280 by Alan
It is one day at a time on anything. By the fact your cancer is stage one you have a lot going for you. As Sara Anne said "First, Let's assume first BCG will work". Also, BCG does not have to be kept 2 hours. That just came from the original protocol some 40+ years ago. Toward the end of my course I could barely hold 30 minutes. Worst case a cystectomy is a choice for life! Sure it is rigorous but, for the majority is it a cure. If you were stage 3 or 4 that would be a different concern. You are not! One day at a time! We will listen.

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 weeks 1 day ago #58279 by sjhatch2024
I have since had my post op appt. with my urologist following my surgery. I had 3 high grade tumors, one on each side of my bladder dome and one in the neck of my bladder. I start my bcg next Friday for 6 weeks. I asked my Dr. to give me a prognosis of my cancer and he said that he was not confident that the bcg will help this time because I have to keep it in my bladder for 2 hours which will be hard for me. He said the bcg may not be able to reach the areas it needs to, mostly the bladder neck. He gave me a pill to dissolve 30 minutes before my procedure to slow my system, Hyoscyamine to help me not have the urge to urinate. So if this does not work he said he will at some point recommend removing my bladder. I have mixed feelings about this. I know many people have had it done successfully but I also know it is not a guarantee my bladder cancer won't show up in my lungs, lymph nodes or liver. I have tried to educate myself concerning this cancer and there are so many things that could happen. It is hard to explain to people how I feel so I vent here. My biggest fear is being a burden on family and friends. I do not want to be "taken care of". I want to be independent and take care of myself. I just turned 54 on Sept. 2. Today has just been a bad day, thanks all for listening.

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4 weeks 1 day ago #58200 by Alan
Rants are allowed. "Things when going well are never quite as good as they appear nor when things look bad they are they are never quite as bad as they appear." Credit whomever started that! We will listen. You have lots of life ahead!

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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4 weeks 1 day ago #58199 by sara.anne
Let’s take this one day at a time First we will assume that the BCG will work . In many cases it is highly effective particularly for high-grade bladder cancer . If BCG fails and the recommendation is for a radical cystectomy that is not the end of the world . If the cancer has not spread bladder removal is a sure cure . There are multiple options after a radical cystectomy but you are certainly not at the point where you need to worry about this . Let’s get through the BCG and see if it works.

It is hard not to be discouraged at this point . But you have a lot to look forward to with an understanding companion and a good relationship. It is worth fighting for .

Wishing you all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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4 weeks 1 day ago #58198 by sjhatch2024
I went to my doctor for my post op. I had 3 high grade tumors, the largest was in the neck of my bladder and it was the one he did not know was there until surgery. I will do 6 rounds of BCG starting September 13th. Then another cysto. My doctor said he is not fully confident that the treatments are going to help for various reasons. The main being that because of the location of my tumors he said it will be hard to get enough BCG to them. I asked him my prognosis for this cancer. I was originally diagnosed in 2014. They were low grade tumors then and the BCG did help. I have had a couple of surgeries since then with only one that showed cancer. This time was different. Anyway, he said that if we can't slow the progression and the fact that they were high grade we might have to discuss removing my bladder. I am not prepared for this and I am not sure I will agree to it. It is not vanity, it is more a sense of why bother? I know it can come back in others areas of my body. I know they can make a new bladder for me with a long and difficult surgery and recovering time. I know there are some people that are born warriors, they will do anything and everything to fight. I have been battling this since 2014, my life has changed. I have a wonderful man in my life that is understanding of my situation and has pretty much accepted I may never feel romantic again. I have to wear pads to work because when I have to go, I have to go. I am just throwing some feelings out there, maybe in time I will feel more like fighting again. I have watched some very good friends in my life wither away from cancer and prolong the process as long as possible. I am glad they have that will. I think this surgery has just been especially hard on my body and a lot to take in. On the outside I look unworried, on the inside it is constantly on my mind. Thanks all for letting me rant. I will check in again soon. Well wishes for all of you!! :)

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