Gathering information for the decision time

The problem with bladder cancer is that the cells of the bladder lining have undergone a change in order for you to get bladder cancer in the first place. This means bladder cancer has one of the highest rates of reoccurrence of all cancers. If your bladder cancer is high grade and invasive you undergo chemotherapy to try to clean up any cells wondering around and get the bladder out before it has a chance to start the process again as it has already shown it’s self to be aggressive.

As for having Chemo and saying have a good day in my personal case the pathology after radical cystectomy showed my bladder was full of CIS and new tumors growing after chemotherapy. None of this of course showed on a CT scan it had to come from the pathology. I had a TURB done in March due to bleeding from a new tumor and my RC was in May.

If you look up the statistics for doing an extensive TURB followed by chemotherapy used for the main treatment for invasive bladder cancer you will see that it has a much lower rate of survival than having chemotherapy and a radical cystectomy. The questioning you have to ask yourself is this; is this about saving your life or your bladder? Personally if I am going to roll the dice I am going to pick the game that gives me the best odds.

Douglas... My situation was a bit different since I wasn't facing total bladder removal, but I think this bears an important point to think about. After discovery of a tumor in my bladder my by gynecologist, I had my first ever visit to a local urologist. Two weeks later, he did the TURBT to remove it.

After the pathology report came back with the "rare" diagnosis of primary adenocarcinoma, he said he would refer me to a larger center that specializes in BC. During our meeting to discuss the report, he said it appeared suspicious for invasion into the muscle layer, but could not be definitely verified, and hopefully they got it all. He said a surgeon may recommend bladder removal, maybe partial removal, he just didn't know. So for those couple of weeks, I was mostly numb from my head whirling around those possibilities.

Just over a week later, I was at Vanderbilt talking to the surgeon he recommended. My options were we could wait and watch, or do his recommended procedure of a partial cystectomy around the tumor site where it had been resected via the TURBT. I was fortunate that it was a solitary tumor in a location that allowed that procedure which is not done very often. He said there was a possibility of the tumor deeper in the muscle than the report could show, or it might all be gone. He left it up to me, but said cancer cells are much like toothpaste... once it is out of the tube, you can't put it back in. Meaning, of course, that if there were any cancer cells left behind, if they are still in the bladder, or travel elsewhere in the body, they likely will show up as mets.

I opted for the partial cystectomy. When the path report of the bladder muscle section came back, guess what, there was a small bit of tumor still there. I was very happy that I had not opted for the wait and watch.

Fortunately I had clean margins and no lymph node involvement on those tested. Like all of us, I am on close monitoring because they really don't have much data as to how these tumors behave in the bladder as far as recurrence or mets.

I know my situation is certainly not on the level of contemplating bladder removal, but the goal is not just to contain the cancer in the bladder, but to take action to prevent to the greatest extent possible, mets to other places in the body.

You can wait and watch, or opt for proactive intervention. The decision is yours to make. I do hope you will give strong consideration to the advice from your very experienced medical team after your results come back next week.

Best wishes.... Catherine

Groucho,
I can understand you being unhappy about your situation we have all been there but are at a different point than you are. I have gone through the anger, blaming the doctor and hopeless phases long ago. It was not as though any of us had a choice here if someone had given us another choice I know I would have taken it. I was just like you I and I was not going to have a Radical Cystectomy there had to be a better way. I took part in a clinical trial to save my bladder that lasted for nine months. I made twenty trips to chemo lost my hair twice and did forty trips to pelvic radiation. By the end of it I could hardly walk and after all of that the bladder cancer came back. I was faced once again with no way out of dyeing or having a Radical Cystectomy. I chose life and I will not tell you it was easy it was not but I will tell you that on this side of it I am very grateful I did. Is it perfect of course it isn’t but it works, is it always convenient no but I will trade convenient for alive. The years since my diagnosis have been the most productive of my life and I sure would have hated missing a minute of it.

You seem to think that we are part of some conspiracy to talk other people into having a Radical Cystectomy. What we are trying to say it is that there is a a good quality of life after Radical Cystectomy for the vast majority of us. Does that mean we have not had complications, of course not what it means is that we work through them. Does it mean we have not known frustration of course not it just means we get past it and move on. I don’t see myself as a victim I see myself as a survivor. I guess we have been on this forum long enough to see ourselves as the lucky ones, we have seen so many that have not had the choice.

If you do not think your present doctor is right then get a second opinion. If you do not want to have a Radical Cystectomy then check into a bladder sparing protocol and see if you qualify. But do something soon before you don’t have choices.