Diagnosed with adenocarcinoma...now what?

I’m copying the reply I made on the other thread to ckfun:

Hello... I had a partial cystectomy in Feb 2010. My adenocarcinoma was 1.6 cm, so relatively small. It was in just the right spot between the ureters to make the partial possible. They got two clean margins around the tumor site and there was no lymph involvement. There has been no recurrence and this past year my urologist says he is comfortable stopping future monitoring now that it has been 10 years. I was 55 at the time. There have been no bladder issues and I consider myself to be extremely lucky that it was discovered early. Best wishes to you and your husband.

Yes, Alan. It was Catherine Harper and she had a partial at Vanderbilt about 10years ago and is doing great. While a partial cystectomy cannot be done with “garden variety “ bladder cancer, it can be successful with some cases of adenocarcinoma. I will try to contact Catherine and see if she can add to this thread.

Sara Anne

There have been MANY good outcomes from a radical cystectomy. I am linking a very good site with all of the options (you'll have to copy and paste) my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion. As you will see there are 3 basic diversions of only one is the external bag. Most posters will say whatever they chose they have learned to like and accept. At Moffitt being a large facility I am presuming at least 2 and perhaps all 3 are done routinely.

Yes, this is a very rigorous surgery so learn what you both can read up on. Interestingly, I have 3 friends where each has one of the 3 available. All 3 doing well 5+ years. One plays golf 2-3 times a week, another was 81 now 86 and plays golf once a week. There is good quality of life. There are others on this board scuba diving, car racing etc.

Note to Sara Anne....if you see this. I can't remember the name of the lady that had this type of tumor with a partial done at Vanderbilt in Nashville (I am sure partials are very rare and have to fit a certain profile). Perhaps she can chime in via the board.

Later edit, it is Catherine H I believe that had the partial....again this is VERY rare.

Moffitt has a great reputation. As you are caregiver I often find your job may be harder that the patient. Someone will be around to listen and please keep the forum posted. I find I learn a lot from everyone.. Pat yourself on the back.