TURBT - Different Countries & Different Protocols - December 14, 2008

Since the bladder cancer was diagnosed 8.5 months ago, I have been able to communicate via this blog and email with only a handful of other bladder cancer patients. The one that's farthest along is David F. in Kent, England (near London), who has passed two years with all clear, and has one final procedure before he is finished, hopefully forever. HK in Toronto, Canada is a few months behind me in treatments. In our limited correspondence I noted some differences between treatment protocols, and most recently some differences in one common procedure - the Trans-Urethral Resection of Bladder Tumor, or TURBT for short. No matter what your symptoms or how you are diagnosed, every bladder cancer patient will have one of these procedures early in the process. The medical folks describe it as a "non-invasive" surgical process to remove visible tumors from the bladder. The good news is that they don't have to cut you open with a scalpel to get to the tumor - hence "non-invasive." The bad news is that they use the natural, existing pathway into the bladder. So I say that it all depends on WHO is being invaded and HOW. There are other procedures involving prostate, ureters, or kidneys that use the same pathway, and the TUR part of the TURBT is common to all.

David F. in England made a brief summary of the differences on his blog, which may be read here. I thought it might be productive for me to address it as well. What makes all this interesting to the average reader is that we have three different medical systems - Britain, Canada, and the US. The first two are socialized and "free" for their citizens, and many want the US to go the same way. Since our government handles nearly everything poorly and expensively, this approach makes little sense to me. But lets set politics aside and see what the differences are between the three systems, at least for this one fairly simple procedure. Keep in mind that the three of us have all had two or more of these, even though I describe them as single events below.

TURBT Overview
USA - My procedure was done in a hospital under general anesthesia, and I was sent home the same day. This is known as an "outpatient" procedure - you do NOT spend a night in the hospital, unless there is a MAJOR problem. Because of the anesthesia, there is no food or drink permitted after midnight, which becomes annoying if the surgery gets delayed into later in the day.
Canada - HK's procedure was also done in a hospital under general anesthesia, and he spent one night in the hospital as an in-patient. Also no food permitted after midnight.
UK - David's procedure included TWO overnight stays and general anesthesia with no eating after midnight, or 7:30AM if your surgery is scheduled for after 2PM.

TURBT Paperwork and Cost
USA - I did some pre-work over the phone to get my record set up in the hospital, and had to visit the reception area (each time) to sign a few forms and give my insurance and credit card information. Maybe 15 minutes total the first time, and much less the second time, since they had records from before. They had called the insurance to estimate what I would be charged, and got it all wrong. I paid a compromise figure that I suggested, but they would have proceeded with no payment at all, since I had good insurance. They would have been content to figure out my part later. The second time they did not ask for any payment in advance. The US system has a stated price for everything set by each provider, but all agree to take the insurance-assigned amounts and write off the rest. Each time I had to deal with bills from the hospital, the urologist/surgeon, the anesthesiologist, and the laboratory(ies) where things were sent for analysis. Not so bad as it sounds, as they all bill the insurance directly, subtract out the write-offs, and then bill you for the net cost. Here's how it worked out:

April, 2008 Stated Cost "Real" Cost My Portion
Hospital $7,332.98 $4,741.17 $474.00
Surgeon $2,275.00 $749.76 $74.98
Anesthesiologist $670.00 $510.00 $51.00
Laboratories $147.50 $96.13 $9.61
Total $10,425.48 $6,097.06 $609.59

May, 2008 Stated Cost "Real" Cost My Portion
Hospital $9,771.53 $6,374.42 $637.44
Surgeon $2,275.00 $749.76 $74.98
Anesthesiologist $670.00 $510.00 $51.00
Laboratories $295.00 $192.26 $19.23
Total $13,011.53 $7,826.44 $782.65

There are other costs to be mentioned. I pay approximately $1800 per year in pre-tax money for the health insurance, and my employer pays about $12,500 additionally for it. And once a year I pay $1200 out of pocket and my employer pays $1500 towards all medical bills before the insurance kicks in. These amounts were consumed prior to TURBT by diagnostics. You can see from the charts that the insurance covers 90% of the "contract amount" and I pay 10%. In the US the big event is having the insurance to entitle you to pay only the lower "contract amount." That's where the savings is - almost half! After that my plan is 90/10 while most are 80/20 or worse. We have a variety of plans to choose from, most costing more per year with lower fees along the way and 20/80 shares. A worst case scenario (which this approaches) on my plan costs about $300 more than the next most expensive plan. Having been relatively healthy all along, my plan was the best until this happened, and they have treated me well and been received well by the providers. So I opted to keep them again for a year, anyway. As far as I know there is no way to tell if David (UK) and HK (Canada) and their employers pay more than that in direct/indirect taxes or not, but one suspects this must be the case - on average.

Canada - no idea about the paperwork of the day, and there are no costs or billings
UK - some forms to sign and checklists gone over - similar to US, and there are no costs or billings

TURBT Accommodations and preparations
USA - I had a bed in a semi-private room, shared with one other, closet, TV, reclining chair, tables, etc. I removed street clothes and donned hospital gown and socks - the US now uses a wrap-around gown that fastens at the side that does not have the exposure problems of the old style. You lie in the bed, which reclines, with a thin blanket over your lower legs. The gown can be hooked to a heated air system if you like. I never needed it. You share a nurse with six other patients -BP and pulse checked frequently, and as the schedule in the operating room clears, you are eventually wheeled (bed and all) to the pre-op staging area.
Canada - no idea about the accommodations, comfort, or gowning, etc.
UK - No idea about accommodations, but their gowns are still the old "ass in the wind" style! Here's some new input from David F. in the UK: "My Hospital (which is fairly new) has mini wards of 4 beds either side of a central corridor with a central nurse station there are perhaps 4 lots of 4 and a couple of smaller single rooms. The wards join one to the other in a square formation around a central core so you get three wards at 90 degrees to each other. In preparation you are now put into a ward adjacent to the Theatre suite. After that you will go to your allotted ward. There is a specialist Urology ward although with the biopsies you can end up anywhere. I have been in one of the single wards once. TV - there is a pay TV system which they push you to buy cards - frankly, I take my MP3 player in and they can stick their TV as it is pretty extortionate - some further way of catching up with funding deficits no doubt and supplied by a third party. Mine gets turned to the wall on its bracket and after every time the technician comes around to move it I turn it back again. I believe the radio is free but only certain main stations. Rip Off. Not sure of the nurses to patient ratio but there always seems to be enough and they work really hard. The only issue I had with the Hospital is how hot it is. The first time I was there we had to bring in our own fans to cool us down. They made the Theatre block air conditioned but not the wards!"

TURBT Pre-operation Staging
USA - In the pre-op staging area I waited for someone to come start an IV with saline and antibiotics, apply adhesive pads for ECG, and they attach leg cuffs with velcro that are hooked to a water system to keep you warm and massage the legs for circulation during surgery. I waited for the operating room to clear and be cleaned in preparation. Without a watch there was no way to tell how long it took. I also had to take a prescription antibiotic tablet the night before.
Canada - Three hours before surgery they start the IV with saline and antibiotics, probably the other things are similar
UK - In the pre-op prep room they start the IV with saline and antibiotics, and generally do the same prep as the US, with the addition of a BP cuff (sometimes - or it's done in the OR)

TURBT Operating Room
Being knocked out for most of the time, we have little first-hand experience to report.

USA - One hour in the recovery room to get over anesthesia, single-drain Foley catheter is inserted and clamped off, and MytomycinB chemotherapy is "baking" the inside of your bladder to kill any free-floating cancer cells. After an hour the chemo is drained, and if your BP is OK they send you away. Then you spend an hour or two back in your room where the nurse cleans things, gives instructions on care, lets you eat crackers and water or juice to take Lortabs, a codiene/acetaminophen combo. The IV is removed once all the prescribed liquids have gone in. The doctor comes through to check also, and within a couple of hours you are sent out in a wheelchair (with Foley still installed) to go home.
Canada - Normally they do NOT give you the chemo treatment in recovery. Sometimes the doctor will come in a couple hours after surgery and give chemo, but not usually. You go back to your room with a double-drain Foley catheter. One is used as normal to drain urine, while the other is used to insert a saline flush at regular intervals. You spend ONE night in the hospital before the doctor comes to check you - generally 18-24 hours later. If OK, the IV and catheter are removed, and they wait for you to pee in a bottle. If that's working to their satisfaction, you are sent home. If not, they may insert another Foley and keep you longer in the hospital.
UK - Again, normally they do NOT give you the chemo treatment at all. Same double-drain saline wash ordeal as Canada. Sometimes you are given a leg bag later, for more movement and comfort. The IV is removed sooner, in initial recovery. You will spend TWO nights in the hospital, then do the same tube removal / pee check as Canada, then you are sent home. And you will have a shaved patch on you leg for electrical grounding.

TURBT - Recovery at Home
US - You take antibiotic tablets for a few days Lortabs (codeine) as needed for pain. The latter causes constipation and stomach upset, so you need to be careful. On the morning of the second day after surgery (Day 3) the catheter can be removed. You have the option of driving to the doctor's office to have them do it, but a 2 hour round trip for 30 seconds of work did not seem efficient to me. So you also have an option to remove it yourself, or get a friend to do it. This is a good way to find out who your real friends are! Having done many to others in the past, I chose to talk my wife through it rather than do it myself. Urination burns quite a bit for the next day or so, but can be offset by doing massive hydration while the Foley is still in. All my clots passed through the Foley. By Day 5 you are walking around OK, and by Day 6 you can perform office tasks and drive and such normal things. Lab results come by Day 7 or Day 8 at the latest, and these generally require a trip to the Doctor's office to get the news in person.
Canada - You have 2-3 days of urination agony that eventually subsides. For any serious bleeding or problems you are instructed to go to the Emergency Room. You take antibiotics for a while, and I'm not sure what pain regimen is given. Lab results come within two to three weeks.
UK - The first urination is quite painful, then it subsides over the next 2 days. You may still be passing small clots up to 3 weeks later. Post-op pain regimen is by acetaminophen or Paracetamol (same thing, prescription strength). Lab results take 2-4 weeks.

I hope you find the similarities and differences informative and interesting. I'm not sure there's much there to analyze the different medical systems and approaches, but the US method of home recovery seems (oddly enough) to be the one with the least discomfort!

In other news, still exercising, and it STILL sucks!


Deb said...

Hi Steve,

Sounds like you are doing A-OK. My husband is NOT a computer user but your descriptions of your TURBT's is pretty much what he went through - twice coming home WITH a catheter and twice without (yes - 4 TURBT's so far). Just had a cystoscopy on Thursday and there was "junk" in his bladder again. Dr. said it looked like some stones and some necrotic tissue - not sure why that's happening. He knocked a bunch loose so he has been passing the gunk - which is like hard crystalized pieces of stone only flat. Weird. Anyway - going ahead with 2nd series of BCG (maintenance) to begin middle of January then another cystoscopy in March. Also sent urine sample to lab to have some type of DNA testing done on it (guess it's more sophisticated than the lab tech peering through a microscope) Waiting to hear on those results. Anyway - just wanted you to know we are always interested in your updates and appreciate you continuing to do this. It's very helpful and makes, at least my husband anyway, feel not quite so alone. I'd like to ask you a couple of questions but hesitate to put them in this comment format. But anyway - keep up the good work - and keep exercising - even if it does suck!


Steve Kelley said...

Hi Deb!

Thanks for the feedback. Sounds like your hubby is doing well under the circumstances!

FYI you can email me privately for questions, etc. using THIS LINK, which is also found embedded in a picture near the bottom of the left column of the blog under "Contact Me." This is how HK in Toronto initiated his communications.

Rob Truscott said...

Canadian Update -
4 TURBTs between Apr 24, 2014 - May 13, 2015.
#1 - removal of 2 inch tumor - in hospital 4 days to due to complications, catheter in for 7 days
#2 - in hospital overnight, did not go home with catheter(yay)
#3 - sent home same day, catheter for 3 days
#4 - sent home same day, catheter for 7 days :(

Never had any chemo with it.

room - you pay for the extras(tv etc), semi private room shared with one other, or sometimes more.

Gown isn't too bad - only small large and double extra large sizes.. supposed to wrap all the way around... but not meant for 6 foot 5 guys, as it looks like a miniskirt.

only the first one had an IV started in advance, the last 3 all had IV started in OR. Show up about 90 minutes before surgery for 20 minute of the vital statistics, get changed, discover the awesome socks don't make it on my size 15 feet. Then moved to pre-op staging.. offer for the hot air blanket.. while there the team comes one a time to ask all the same questions - making sure you are the guy getting the tube shoved up your pecker....

sent home with a prescription for anti-biotics for 3 days, Tylenol 3s with codeine, and a stool softener (T3 constapates you)...

standard discomfort during urination after catheter is removed, which cannot be described without wincing...