Need advice

3 years 2 months ago - 3 years 2 months ago #59923 by Alan
Replied by Alan on topic Need advice
Welcome Mike,

I was in your shoes 12.5 years ago. The most important piece of advice I can give is take EVERYTHING one day at a time. I have to remind myself of that almost every day on many issues.

A few thoughts here. A second TURB is done very often. It is used as a safety and second check especially on large tumors, high grade tumors and when the doc simply wants to sure of staging. It is good medicine.

Also, have you been given the pathology report from your first TURB? You really don't know much until that is done. In rare circumstances posters have come back with even a no cancer as in your post the doc has some questions on "type" and a visual isn't always correct. It happened on my 1st TURB as my URO guessed it appeared to be low grade but, was wrong from my path report and he is skilled. Then you will have a plan of attack.

Easy for me to say but, lets see what stage this may be hoping for the best and prepared for the worst. Meaning it sounds like this is no more that stage 1 or 2. If stage 1 depends on the grade on treatment. From "waiting and watching" to BCG/immunotherapy. If 2, yes a cystectomy would be in play. On that subject it is still very treatable and beatable. I personally have 3 friends/aquaintenances that have had to go through this. They are all active golfers and doing well with one 7 years post, another 5 and yet a third at 3.

,As for work and recreation? You will be able to do it all! Keep asking away as you go.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 2 months ago #59921 by mikequestions
Need advice was created by mikequestions
I was recently diagnosed with T1, high-grade bladder cancer. I just had turbt surgery, and the surgeon met with me post-op, about 10 days after the procedure. He said the cancer was "larger than he expected" with the original cystoscopy, and that he was not completely sure of the type of the cancer, and will need to do another another surgery to explore the base area, clean it up, and perform an additional biopsy to make sure it's not T2 cancer and in to the muscle layer. I'm scheduled for that surgery in about a week.

Even typing this is freaking me out all over again. My hands are shaking. Even though I've accepted this as "real" it seems strange that it's me and that I'm writing this.

I believe I fully understand the difference between T1 and T2, and what that means as far as treatment goes. It's not a rosy picture either way, and I'm braced for it (as much as I can be). The paths are pretty clearly defined.

The thing that I am not sure of, is if I will be able to continue work when my treatment (or bladder removal) is done. I'm 56 and a business owner, and I would like to continue working for a while if possible. I'm curious others have done this, or if I'm completely unrealistic with my outlook. I'm not ready to give up on life, and have no intention of being unable to live it. I have to be realistic though, and I'm scared as hell. Will I have to give up recreational activities? Travel? Your thoughts are appreciated.

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