I thought I better get on here and give an update. So much has changed in the last week and a half. I'm going to back up just a little bit so it doesn't seem so confusing.
My Dad had his 2nd tumor resection on March 12th trying to determine if the cancer was in the muscle since the first pathology sample didn't have muscle tissue to make this determination. When they got in there on March 12th the tumors had regrown in their original site which indicated to Dr. Bullock that Dr. Stokes either didn't get it all the first time or it was that aggressive and grew back.
Dad got a call from Dr. Bullock on March 21st with the pathology results and he told Dad that the cancer had definitely invaded the muscle and the 3 other sites that he had been suspicious of Carcinoma In Situ had tested positive for cancer and we had no option but to remove the bladder. Surgery was then scheduled for April 12th with April 6th for Pre-Op and Surger Consult with Dr. Bullock, Pre-Op scheduled first.
When we got in the Surgery Consult with Dr. Bullock he pulled up Dad's chart and started reading from the pathology report, this is where we get confused, he starts telling us that the cancer has NOT invaded the muscle that it is adjacent to the muscle and the 3 other spots that had been biopsied (the ones he felt was suspicious for Carcinoma In Situ) all came back no malignancies. For 2 weeks my Dad has been so upset and down in the dumps and in a matter of seconds we hear the opposite of what he had been told on the phone. I was so confused I asked Dr. Bullock 3 or 4 times to make sure that he was telling us that it had NOT invaded the muscle at this point. I had been freaking out worrying about how long it had been in the muscle and if it had spread to the other organs already and just really thinking the worst.
When Dr. bullock looked at the surgery schedule and realized that dad was already on the schedule he started talking about the surgery. What he wanted to do was to do a cystoscope when they first got into the OR and see if he saw any obvious tumor regrowth, if there was obvious tumor they would remove the scope and transition to the full bladder removal. As he was looking at the schedule he realized that they had scheduled the surgery wrong. Dad has said all along that he wants the Neobladder but they had him scheduled to get the Urostomy bag after the bladder was removed. So it was quickly decided that they wouldn't be able to remove the bladder on April 12th if necessary, so what Dr. Bullock decided was that he would do a cystoscope in the office on April 6th and if there was obvious tumor regrowth we would cancel the OR time on April 12th and just reschedule the bladder removal on a different day. When he got in the bladder in the office he found 3 different sites that he was suspicious of tumor regrowth but no obvious tumor, one of them being in the middle of one of the original tumor sites. He decided at that point he would like to resect those sites one last time to see what pathology tells us. We went back April 12th, since we had the OR time, and Dr. Bullock did a 3rd resection. He said that Dad probably wouldn't have to go home with a catheter because it would be a superficial resection. Well we got our hopes up too much on that one. Dad did end up coming home with the catheter again because they have resected the original tumor site so many times and had to go so deep that the bladder is very thin there. Dr. Bullock said the chance of rupturing his bladder was too high if he didn't have the catheter for 4 or 5 days to allow the resection sites to heal over. Reports from Mom says that they have figured out how to strap the leg back on him and he's not having as much discomfort as he did with the past catheters.
SO ONCE AGAIN WE WAIT!
If pathology comes back showing tumor, we already have another surgery date for May 17th, a little farther out than I would like, but I feel we have a little more time since it hadn't invaded the muscle as of March 12th. I got a copy of pathology so I could read for myself what the truth was. I work with medical records and had to see the documentation before I could comprehend what was real at this point. My dad has also now requested that all his reports be sent to his house, partially because he knows I like to see it all.
If pathology comes back showing no tumor we will be transitioning to the BCG treatments back home with Dr. Stokes.
I really hope this didn't come across as me talking bad about Dr. Bullock because that's not what I meant at all. I just wanted to update everyone on the change of events. He is an awesome Dr. and we all love him and trust what he is doing, not sure how the information got so messed up on the pathology, but I am a strong believer that things happen for a reason. I told Dad that it wasn't meant for him to get his bladder out yet so we are thankful that everything was scheduled wrong because otherwise we would have went ahead with the bladder removal and he has been given another chance to save his bladder.
Quite the change of events in the last few visits. I will definitely repost and let you know what the pathology results are.
Thank you all for all of your information, this site has been such an amazing way for me to deal with Dad's cancer diagnosis. Hearing all of your words of encouragement and your experiences has gave me comfort in knowing what to expect. I can't even begin to tell you how much I really appreciate it.
I will talk to you soon!
Carol