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Typical duration: cystoscopy > TURBT
Greetings to all. I’m not happy about my medical condition but I am relieved I’ve found this forum.
On 9/28/18 I had a cystoscopy which revealed a tumor. A few days later a CAT scan confirmed the presence of the abnormality. I was notified around that time that a TURBT is scheduled for 11/15/18. That makes 7 weeks total from the time it was discovered until the time it will be removed.
It’s been almost a month since the cystoscopy and I’m beginning to think I should’ve been more assertive and requested (demanded?) an earlier surgery date. I envision the tumor becoming more invasive as each day passes. This has been the longest month of my life.
Is 7 weeks the norm, unreasonable, unconscionable?
Thanks in advance for any feedback. I’m sure I will be visiting here often for month or (hopefully) years to come.
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13 Replies
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I may have misread some of what is going on with the catheter and and MMC. I understand the desire to keep it inside but, elevating the urine bag above the bladder may not be a good idea. Letting the possibility of backwash of bacteria etc may be in play. If you were clamped to hold a treatment inside there also has to be an optimal amount of time you would want it in. For sure it is important afterwards of any extra treatment to keep the urine bag below the bladder.
Sounds like you are doing well!
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.
Thanks for the supportive replies folks.
It’s now been almost 2.5 days since having my first (and hopefully last) TURBT that included the intravesical instillation of Mitomicyn-C (MMC). I was prescribed phenazopyridine as needed for pain and cyprofloxacyn, an antibiotic. The phenazopyridine was especially helpful, especially during the first 36-48 hours. Urinating went from an excruciatingly painful experience (on all 4s at one point) to being barely tolerable during that period. Otherwise I felt perfectly fine. I’ve been drinking water as if I were being paid for each ounce consumed and I’m happy to report that today the burning has subsided considerably and I almost welcome the experience. Only a few small flecks of blood are visible as as my bladder is being flushed with each visit to the toilet.
As I wrote recently, I awoke from surgery to find, or be told of, a clamped catheter preventing the instilled MMC from going anywhere but where it needs to be (in my bladder). The rigid resistance of a clamped catheter was most painful. I did some reading today and learned of a novel technique purported to improve patient comfort during intravesical instillation of MMC. By elevating the urine bag above the supine patient, MMC can be retained in the bladder by hydrostatic pressure. Has anyone else experienced painful instillation or experienced the process using the “hey, why don’t you unclamp the tube and lift the bag” technique?
My best to all.
Good to read about your progress. You are on your way to beating this!
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.
Glad to hear things are going in the right direction with your TURBT!
Thinking of you and praying that you continue to heal up!
Sounds like everything went well!
Rest! Update when you feel better!
10/25/18: TURBT
11/06/18: DX Ta – low grade non-invasive TCC
07/07/20: Recurrence. TURBT (07/30/20)
08/13/20 – 09/17/20 gemcitibine chemo intravesical therapy
12/14/22 – Cystoscopy Recurrence
01/19/23 – TURBT + Gemcitibine intravesical.
01/23/23 – DX non muscle invasive high grade
Just checking in to say the TURBT went well and Sara Anne couldn’t have been more correct when she stated that most of the vast uncertainty is gone.
Doctor said he removed 2 small (about 10mm) tumors and said that they appeared to be low-grade (if I recall correctly). Mitomycin C was instilled. I experienced significant pain immediately post op as the catheter tube was blocked entirely in a successful attempt to retain the MMC within the bladder. I’ve never felt the need to urinate so badly in my entire life. The pain subsided little by little over I’d guess a 45 minute period. I attribute much of the pain reduction to the doses of fentanyl administered every few minutes. It’s important to note that I have a “moderately enlarged” prostrate which may have contributed to the pain both at this time and when the catheter was removed a short time later.
The entire process … registration through discharge … took about 5 hours. I felt almost normal on the way home, and continue to experience no bladder spasms or pain at all. I feel great, really, until it’s time to pee. The stinging and burning upon urination continues to be … well … horrible. I may have overdone it upon my return home (more on that later) and need to take Jim’s sage advice and rest and continue to drink plenty of fluids. I will indeed call the doctor’s office if the burning continues at this level tomorrow.
It is well past my bedtime. I will continue this post tomorrow and include an update on my physical condition as well as the name of the medications I was given at discharge. Thanks and good luck to all. I’m much more hopeful than I was just 12 hours ago.
Tony….
I read your post, and my goodness your words ring!
We are only human and our minds are just wired to think. Our family and friends keep us busy and help us thru with distractions and things to do, but the quiet times are difficult. I found binge-ing on a TV series helped get thru those quiet periods.
Your next time stretch will be waiting for the pathology report. It is crazy….. but when you start thinking, find something to change your train of thought.
Post surgery pay close attention to your body. Don’t be the hero and think you’ll get through something. if something doesn’t feel right or seem right…..call your doctor. rest.
Hoping all goes ok and that you get the best possible news.
Stay strong!
Jim
10/25/18: TURBT
11/06/18: DX Ta – low grade non-invasive TCC
07/07/20: Recurrence. TURBT (07/30/20)
08/13/20 – 09/17/20 gemcitibine chemo intravesical therapy
12/14/22 – Cystoscopy Recurrence
01/19/23 – TURBT + Gemcitibine intravesical.
01/23/23 – DX non muscle invasive high grade
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.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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.
Hello knifedealer,
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)
Second recurrence discovered June 8, 2020 six months later.
Tony,
Here’s hoping you can be worked in next week. Either way, keep us posted.
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.
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
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.
Welcome to the forum but I am sorry that you have to be here Just know that there are lots of people reading this who have been exactly where you are.
Six weeks or so is not at all unusual in scheduling a TURBT. Whatever is growing in your bladder has been there for quite some time and a few weeks is not going to make a difference Since this procedure is surgery an operating room must be booked and the requisite personnel
scheduled. The urologist will remove as much of the tumor as he can and send samples of it to the pathology lab for analysis And here’s something else that is going to try your patience since it can take up to two weeks to get the pathology report back And until the pathology report is back a definitive diagnosis simply cannot be madeWe will also be sending good thoughts your way and please let us know how this goes
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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