Bladder Biopsy in the UK - December 23, 2008

Hello and Merry Christmas to all. The inspiration (and much of the content) of today's post is brought to you courtesy of David F. in Kent (near London). He has managed to describe the UK bladder biopsy process, atmosphere, and capture the essence of the event with good humor, considering the circumstances. One major difference between US and UK medical care, besides how its funded, is the fact that in the UK you work with a National Health Service "Consultant," assigned randomly based on who is on duty and what your condition is. This person, who may be a specialist (depending on the factors) arranges everything - dates, doctors, assistants, in-hospital scheduling, bureaucracy running, etc. On no occasion do you choose WHO does WHAT to you. Other doctors, surgeons, and nursing staff are all assigned by who's on duty when you are there, and perhaps within that subset the consultant may have a little influence. Where you go, hospitals, clinics, etc. are a matter of negotiation rather than convenience. Only the consultant follows your personal case from beginning to end. In the US you the patient call all the shots. You choose the doctors (subject to limitations of which ones participate in your health insurance plan, but if you pay the full price you can choose anyone), you choose the dates (if the doctors and place are available), and you have the option to accept or reject any treatment pattern or portion thereof. Since most in the US are now content to be ignorant of most non-entertainment-related subjects and to let others (the smart people) figure out the hard things, the current preference for a socialized system makes a perverted sort of sense. But since YOU are choosing to educate yourself by reading this blog, then YOU may actually prefer our imperfect US system over the UK one. In any case, take a look at what a simple bladder biopsy procedure looks and feels like in the UK. For comparison, the same procedure would be done by my Urologist, on a date that was mutually agreeable, in his office with a local anesthetic, and I would probably be able to drive myself home within an hour or so.

Scar Wars VI
Return of the Bed - I
In a Galaxy Far, Far Away

Our Hero returns having been trained by Yogi.
Our Hero has lost his sense of Tumour.
All that is left of the Carcinoma in Situ has been blown away.
The BCG and its Forces of Good have smashed the remaining cells of resistance.
Once again the bladder functions as it should.
Our Hero, keen to ensure no further outbreak of hostilities goes once again into the NHS
Filled with Trepidation (and other mind bending drugs) he enters the Theatre of Operations. Just One More Time!Darth Urologist and her evil henchmen having failed to operate last time are keen to get our hero on to the table? "Do you expect me talk Darth?". "No I expect you to cry" Having starved, as instructed and arrived shaken, not stirred at the Hospital, our hero was led immediately to Theatre Preparation but was told, as were the others in the area - "don't get changed as we don't have any beds and you may be cancelled." "Deja Vu" thought our Hero Nero! "What did you say?". "Deja Vu" "Wow I thought you were about to say that". Time ticked by and our hero practices deep breathing and self hypnosis and listens to music and generally brings his blood pressure from off the boil to slightly above having your head squeezed in a vice.

Then the inevitable happens, the Registrar walked in and said that we are cancelled but asks me alone to stay as I am a priority and it might be possible to find a bed. The chap opposite gets dressed and goes off to enjoy Christmas and new Year without his Prostate being bored out. The other chap, who has been very nervously waiting decides to pay to go private and within 15 minutes he is signed up and gowned and off to Theatre giving me a nervous look and a thumbs up. I smile and wave reassuringly to him. He looks like I feel - poor fella, I know what he will feel like in the morning...

Interesting stuff? Read the rest of the story on David's Blog HERE.

Interesting - Or Maybe Not - December 21, 2008

I have a reasonable amount of traffic on this blog, about 20 people per day. The blog shows up on the first page of results, often near the top, on most Google searches. I get a few nibbles from Wellsphere as well. How can I tell? Check out the links near the bottom of the left column on the blog. There's one called Sitemeter. Anyone that would like to can click on that link and then select "details" under recent visitors, and see some information about each visitor. Not your home address or anything, but usually the city where your ISP vendor's site is located. If the visitor hits from Google or other searches, you can see what they searched for. I've been browsed as a result of several search hits beyond my buddy in Michigan who were also curious about BCG and TUR and beer, so I'm happy to have served that crowd - pun intended! A lot of others hit and move on quickly, and a few do deep hits and run. No comments left, no repeat visits, just harvest and move on. This is not a problem, because this is exactly what the blog is for! And if affirms that I'm not personally as interesting as I think I am - a good thing to keep in mind...

I did want to comment about last week's post about TURBT protocol differences. I did update that post to include the hospital ward ambiance information that David F. provided for the UK - fascinating stuff. Do go back and check that out, if you missed the update. I also wanted to comment on the cost data I provided for my two TURBT surgeries in the USA, one in April and one in May of 2008. The two procedures were IDENTICAL with one exception. For the first one they intended to do a chemotherapy "bake" with MytomycinC, but they did not, because of a bladder perforation (puncture). For the second one, they did do the chemo bake. According to my receipts, the retail cost of of the Mytomycin was just over $2000, which accounts for most of the cost difference. But there is still about $500 of difference - the second procedure costing about $2500 more (at retail) than the first. Being the curious type, I looked into the details, such as were provided. They proved interesting if not informative. "Recovery Room" was about $80 more for the same nurse (Millie) and the same amount of time as before. Maybe the extra charge was for Mytomycin disposal? Pharmacy was about $100 more - no idea why. I might have received an extra bag of saline or two, but that would be covered in the Pharmacy-IV solutions increase of $50, one would think. Lab was $100 more also - maybe it costs more to look at one small sample vice two large ones? Med supplies was $40 more, but that was explained by the fact that I had supply kit Steri-4 the second time and Steri-3 the first time - again for identical procedures. No idea what the difference is, or why a 3 tray was fine before. Having worked in a hospital (albeit 25 years ago), a likely scenario is that the supply rack was empty of 3 trays, so a 4 tray was grabbed. Or vice versa, since my first surgery was much later in the day. All in all it's a mystery.
I have seen the same phenomenon when visiting the specialist's office. Some days the "Office Visit" code is different and the charge is $10 higher (on contract cost), some days they charge $7 for the urine cup (for which the contract rate is $0.50) and other days they don't, though I use one EVERY time. I think the system is so complicated that things are often overlooked (like the urine cup) or overcharged (tray 4 instead of 3), and it all gets lost in the shuffle. All the checkers can do to check is see that appropriate things were used for the related procedures. I suspect that things are NOT included more often than up-charged - at least that's been my experience. Of course by now I should be getting a "good customer" discount from the specialist's office. Maybe a coupon or punch card - "After completing 10 BCG treatments, the 11th one is FREE!" All in all the US system seems to be working well for me, and the errors (if any) have not been very substantive in amount. I think the complexity drives errors and omissions by design, and the insurance companies "win" every time an item is forgotten. That's about as political as I care to get on this blog.

In other news, exercise continues to suck.

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!

In Other News, Exercise STILL Sucks! - December 6, 2008

I see that I have not posted an update for two weeks. What I have been doing instead is updating the Current Status section to the left. For those of you that only check updated postings, I should probably summarize the last two weeks of mini updates here in a post. As you recall, I committed to start exercising, and I expected not to enjoy it very much, despite all the assurances of all you skinny exercise-lovers out there.

A co-worker convinced me not to try the somewhat lame health center at the office. I went over during the morning to check it out. They have one of everything - universal gym, free weights, dumbbells, elliptical machine, rowing machine, standard bike, recumbent bike, treadmill, and a couple of TVs with cable, VCR, and DVD. Also they have a set of scales, blood pressure monitor, body fat estimator, and other miscellaneous devices. As I noted, it's OK, and the price is right. Nothing spectacular, and the elliptical machine was broken. My co-worker pointed out that our identification cards include one for access to the Air Force Base, and that we are allowed to use the fitness center there. He raved about how nice it was, and offered to accompany in my journey of discovery without pressuring me. I figured, what's the harm? It's on the way home, and the price is right there, too!

We went over after work on Monday before Thanksgiving (which is always on Thursday, for you non-US types). The place is enormous. Locker rooms, shower facilities, and two full-size basketball courts surround a fit-food court, spinning room, and lounge area with an indoor rock climbing wall. Upstairs a spongy track with two lanes for runners and two lanes for walkers encircles the basketball courts, martial arts center, free weight and strength machine area, and aerobics area. The aerobics section has between three and ten each of the latest, most expensive machines, and several of each type - treadmills, upright bikes, recumbent bikes, elliptical exercisers, and at least three kinds of stair-steppers. There are also rowing, climbing, and other machines, including a fearsome looking automated "Jacob's Ladder." My buddy introduced me to a couple of the elliptical machines - one hurt my lower back and one didn't. We also tried the recumbent bike, for about 10 minutes each. The next night we did 15 minutes each on the non-hurting elliptical and an different recumbent bike. On Wednesday I was on my own, and did 30 minutes on the first recumbent bike. All of this was attempted at very low resistance levels.

I took Thursday - Sunday off (both work and exercise) for the Thanksgiving holiday. For the main day we hosted another couple and dog-sat for some other friends. So surrounding the feast were four adults, five dogs, and six bottles of wine. It was a long and enjoyable day! We ate well, and far less than usual. With no sugar, white flour, pork, shellfish, preservatives, artificial sweeteners, and natural/organic on the rest. We had a (free range, organic) turkey, stove-top (organic) dressing, homemade gravy (with cornstarch), root vegetables, two green organic salads, organic green beans, whole grain bread rolls, and butter. And my wife managed to make a whole grain pie crust and surprised us with both apple and pecan pies, sweetened with honey. All most excellent!!!

Monday saw a return to work and exercise. Alone again (as I prefer), I experimented with the same machine, and dialed in the settings for a 25 minute workout plus a five minute cool-down. It has a built in heart monitor, so after I input my weight and age, the monitor established heart rate zones for me. I was able to keep in the desired zone (94-145 for me) for about half the time. And it was absolutely brutal, even at a low level similar to the previous week. I went home, ate dinner, and went to bed exhausted. Wednesday was better, with 22 minutes in the zone, and Friday better with 25 minutes in the zone. I developed a sore spot in my tail bone area, so I need to watch that over time. Maybe switch to another machine type now and then. In any case, I seem to be getting the job done, and for the record, I am NOT loving it! My plan is to increase to four days next week, then five days for following weeks. If the machine works out, I will probably buy one to use at home - probably in the mornings. The last thing I want to do after a long day at work is go exercise, but the price is right for now. Morning workouts mean showering in the gym, which is a logistical nuisance, so we will stick with the program for the short term.

In other news, many of you have been curious about the diet, and it may be a big factor in battling recurrence of cancer. The problem is that I don't know what works and what doesn't. If I continue to be successful and stay cancer free, here are the things that could be contributing, and it could be any one, or several in combination that does it:
Surgery to remove tumors (TURBT)
Bio-immuno therapy treatments (BCG)
Diet - avoid carcinogens or potential carcinogens (pork, shellfish, artificial sweeteners, preservatives, fertilizers, hormones, etc.)
Diet - avoid cancer feeders (sugar, simple starches, white flour, processed foods)
Diet - consume cancer fighters (green tea, cruciform veggies, dark greens, dark berries, cabbage, soy, chocolate, turmeric, etc.)
MCP - Modified Citrus Pectin, a chelating agent (to remove metals from the system)
Exercise - 20+ minutes per day of elevated, aerobic heart rate (4-5 days/week)
Deep Breathing - cancer hates oxygen
Prayer - the power of God (should not be discounted, as many studies have proved a "positive attitude" is strongly correlated with cancer fighting!)
Blogging - having a place to summarize thoughts and rant occasionally may improve attitude also!

And in other news, I still want to do book reviews on at least 4 diet books and maybe a couple of others. Once I get the exercise timing and routine dialed-in, there may be time for those!

In still other news, I may be able to maintain the exercise, but it STILL sucks!