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still confused.

7 years 8 months ago #42316 by CatherineH
Hello Jim... I felt the same way in the beginning also. Confusion is certainly part of things until a few doctor visits and a firm schedule of events gets put into place.

After my referral consult and I knew I had to have a partial cystectomy (after my initial TURBT), I told the doctor that I needed a little bit of time to get things at home in order. I was about 85% through a pretty major remodel and the house was still in chaos. He said as long as it was no more than six weeks, he would be comfortable with that. We settled on giving me three weeks to get things organized enough to come home to afterwards. (My surgery was 300 miles away.)

My tumor was considered fairly small for its type at 1.6 cm (2/3 inch). He estimated that it might have taken 18 months or so to grow to that size but that was just a guess on his part. There's really no way to know for sure.

I wouldn't worry too much about waiting until the 17th. Just be firm about getting to the next surgical step very soon after that. I'm sure your doctor will think likewise. Until then, keep up your normal routine, take your lovely wife out, eat well, and stay rested as best you can. Try not to get run down with worry... that won't help anyone at this point.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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7 years 8 months ago #42315 by ichbinjim
I received a message from my Dr who said that the Cancer Doctor wanted to do a
flexible cystoscopy first to see what type of surgery was needed. I was under the opinion that it could be removed doing the initial procedure. May be this is
normal for the UC davis group or does the scan indicate it is too bad to do it without first looking ? How much can they tell from a CT scan about the grade and type ?

This isn't scheduled until July 17 which seems extreme to me but UC Davis is in high
demand. I wouldn't think the mass will change a lot over the next couple of weeks
and it could have been in my bladder for some time.

The not knowing and time delays are very hard for my wife and I to deal with and that has been shared with our doctors who are probably doing there best.

I would strongly reccomend a CT scan for the golfer for peace of mind. I have had
a cystoscopy before and while not fun isn't all that bad.

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