At least after tomorrow most of the uncertainty will be gone (and probably new others will arise.)
As for what to expect, I can only relate my experience and perhaps a glimpse of what others have experienced, but your mileage, as they say, may vary.
First, I will admit, that males have more problems. For myself, it was like a dental appointment. Out patient surgery, went home a bit groggy from the anesthetic, and that was it. Perfectly normal by evening. Some people who have more extensive tumor removal, may need to stay overnight (unusual) or go home with a catheter (not quite so unusual.) I had no pain whatsoever. I think they advise you to avoid heavy lifting for a week or so.
You will do fine.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Well the TURBT is on for tomorrow as originally scheduled. Admittedly I never called the urologist's office to ask that I be accelerated. Partly out of fear and partly because life gets in the way. Over the last 7 weeks (since tumor discovery) there have been days when I've hardly given my condition a thought because I get so caught up in family, work, hobbies, etc. It's the down time that can be challenging, however. Like when I awaken at 2 am and the mind starts racing. I turn to look at the clock somewhat later and its 3 am, then 4 am .. you get the picture.
The uncertainty of outcome, both short and long-term, are at the core of my fear. Not knowing exactly what will happen tomorrow, a month from now, or a year from now, can be frightening. I've been trying to turn it all over to some benevolent power that I believe must exist somewhere and go on living one day at a time.
One thing I've learned from this process is that the needs and wants of family and friends don't change just because I likely have bladder cancer. Life goes on for everyone and I can't expect anyone to drop everything because it may make my life a smidgen easier. I must do everything I can to take care of myself, even if it means not living up to a commitment I made (e.g., babysit a grandchild, repair a friend's tractor) prior to learning of my current condition. That said, staying involved in and being helpful to friends and family is what has kept me sane over the last 7 weeks. I guess the key is finding balance: between caring for self and being of service to others.
Two questions: How much post-op pain should I expect and how soon after the TURBT will I be able to return to normal activities?
I will return to this thread soon. Best to all in the interim.
I don't know if this will help, but I asked my Dr. to put me on the ASAP list. I was told later that tumors, kidney stones, and prolapse bladder were moved to this list anyway, but I did ask, and we did pray. My doctor has a schedule that is booked for 2-3 months.
Someone developed pneumonia and I was called for a surgery date only 6 days after the scope. I will be praying you get a sooner surgery date.
DX 10-19 First TURB Low grade, non invasive papillary urothelial carcinoma pTa. Recurrence 11-19 Second TURB DX Papillary Urothelial Neoplasm of Low Malignant Potential (PUNLMP)
Thanks for the reply folks. I don't consider myself to be the kind of guy who expects everyone to drop everything and cater to me every time I want or need something. In fact, on the Painfully Passive > Annoyingly Aggressive scale, I consider myself to be slightly unassertive with respect to many issues.
But this issue bladder cancer.
So I must guard against falling back on a "don't rock the boat" approach and instead be my own best advocate. Having spent an entire career working in a large bureaucracy (government), I know that the squeaky wheel gets greased first.
From looking at the tumor on the monitor during the cystoscopy, quite an unwelcome surprise I might add, I'd agree with Sara Anne that it's been there for a while. A seven week delay is probably of little consequence. With that said, I have to wonder if my urologist would allow seven weeks to transpire from discovery to TURBT if he owned the tumor.
But this tumor is my tumor.
All preoperative formalities have been completed and now it's a waiting game. So rather than just sit on my hands, I will take Alan's advice and send an email to my urologist's team letting them know that the wait is taking an emotional toll and ask to be accelerated should an unexpected opening occur sooner than 11/15.
I will keep you posted.
Best to all,
Tony a/k/a (New York made vintage) Knife Dealer
1 year 3 months ago - 1 year 3 months ago#56057by Alan
Welcome. 7 weeks is a little longer wait than most. Just being up front. There still could be many reasons for this. Vacations, OR being really booked, etc. At the same time, tumors usually don't grow that fast which I am sure is your concern. If you are flexible and depending on their requirements for TURBS.... meaning EKG, blood work etc (pre-op stuff)., you might call and ask to be accelerated into something if openings occur earlier, which often does happen as those tests preclude some from being done, people get sick or the patient runs s fever etc. One thing I have learned is to be knowledgeable AND be an advocate for yourself.
My URO had me in the OR 4 days after the scope and CT scan. However, it didn't hurt that me knew my wife (an RN) at the hospital either plus we are a small/medium (75,000) size town which has to be a factor.
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.