Checking In

Hi George,

Well, he went to take his CT scan today so we'll see what that says.

I'm not really sure what this doctor saw or didn't see. I asked him, but he seemed vague about the "why". Bottom, line, he can't give any absolutes and say that the variables have changed so much that we don't need to worry about getting a Cystectomy.

The only thing his input really did was throw us into more stress.

We absolutely know this surgery will need to be done. There's no guarantees that even if the BCG works, that the in situ won't come back and move even faster or land outside the walls of his bladder next time.

What this doctor said is that if my husband comes in for a CT scan and other tests every three months, that they'll be able to catch the in situ before it moves outside the bladder; but, of course, he couldn't commit or guarantee that it would work this way.

My husbands body chemistry could change for any number of reasons. . . if it becomes too acidic (an acidic system is a growth environment for cancer) then the cancer may move even faster, who knows.

So, we're right back where we started from.

We'll see what the CT scan shows.

Rayn

WOW!!!
Complete change in direction. Wonder what caused that? This sudden change in direction is worrying to me. I agree that a few tests need to be done but why is he back ing off of the origional "get er done now" diagnosis.

I guess the tests and CT will help firm up a direction for you.
Keep asking the questions and if the answers don't seem to make sense.... ask again!

We'll be here.

George

Rayn,

I'm not familiar with the history of your husband's situation. Have not been able to keep up with all the postings on the forum.

I had CIS and tried BCG for a couple of years keeping very close tabs on recurrences. CIS is so unpredictable. Although my FISH test, cytology came back negative - the cancer went under the lining of my bladder. Not a common thing to happen and so glad that I had a doctor that picked it up on screen during a cysto. He saved my life. I had my surgery not long after.

I think you make an excellent point with your husband's age as well.

I know is so overwhelming to constantly be making such important decisions. Trust your instincts. Not sure if you've gotten a second opinion but, of course, I highly recommend it.

Gracie

Hello All, Been MIA for a few days. Lots has happened; not in a good way either.

We went to the doctor's on Monday to see about the date for the surgery. Bearing in mind that all we've been hearing the last 3 months from these doctors is that my husband's bladder needs come out "right now", you can imagine the pure frustration when his doctor all of a sudden said that going for yet another CT scan, a BCG and a cysto was not all together out of the question.

So I began to ask him all the pertinent questions about why he and the other professionals all this time were telling us about the urgency for this surgery.

Even after this last surgery when they said that they got all 3 malignant tumors out but that the in situ was still there and very aggressive, he's now telling us we can either go for the Cystectomy or do another BCG and Cysto; that it's our choice but, of course, he can't make any guarantees.

Well, of course he can't commit to what he's saying because if we go for the BCG and the in situ moves to his lymph system, we can't sue him (we can't sue him anyway, because it's the VA).

So now I'm completely confused, but he didn't back off of his position regarding the either or. He said if my husband is as conscientious about coming back for his CT scans, BCG's and cysto's every 3 months as he's always been, he thinks that they'll be able to catch the in situ before it goes anywhere dangerous.

Look, I was never in a big hurry to have the whole lower half of my husband's organs removed. It's the most major surgery on the planet, but now I'm not sure what to think.

I fought so hard to get him to change his mind when the doctors were saying it needed to come out 'now'. It was completely exhausting and heart breaking. Now I find out this was all a complete waste of time and energy.

He's going in for a CT scan tomorrow. We've decided between ourselves to see what the scan shows and then talk about a decision after that.

I dunno guys. They think because he's strong and healthy that he can handle going back over and over again for these cysto's and then surgeries to remove any tumors that grow back, but I posed the question that the time to really think about seriously doing this kind of surgery is when he "is" healthy and not wait until he's 75 or 80, when anything could happen. He's 68 now. Doctor nodded his head and said "That's a good point." . . .

He's basically leaving this decision up to us, which he should do, but it was like getting a reprieve from something
that's going to cause the same worry and stress as we keep going back for these other treatments.

Rayn