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.

TURBT Post-Op
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!

Why Exercise Sucks - November 22, 2008

It's a simple fact. I absolutely loathe and despise exercise. Mind you, I don't object to DOING something that may involve exercise. In school I was an avid player of both basketball and soccer (football in the UK), and I had few issues aside from asthmatic shortness of breath in performing adequately. In my mid 20s I decided that it was damaging my knees to continue in these sports, so I turned to racquetball for a while. Ultimately a lower back injury put an end to that. To my way of thinking none of those activities were "exercise," because they had a competitive end goal in view and my mind and spirit were completely engaged. The sports were simply recreation, and any aspect of exercise was incidental. While I'm probably as competitive as I ever was, the venues to explore that competitive spirit have become more mental than physical. Like most, I had my experience with health clubs, where they take money from your credit card or bank account monthly, and you go a few times, then become too busy or lazy to go, and too embarrassed to cancel until the expenses get out of hand.

About 15 years ago I changed employers. The new employer was located in California, in the heart of Silicon Valley. Unlike any place I had ever worked, they had a full-time health club on site, complete with locker rooms, showers, and TWO full-time health and fitness coaches, all provided free of charge to any employee. New job, new place, new schedule - so why not add a new exercise routine among the other changes? I jumped in with both feet. The consultant measured height, weight, blood pressure, heart rate (both resting and active), and body fat. Though it didn't show at the time, I was borderline obese. A blood test (for a nominal fee) confirmed that my cholesterol scores were all very high. The trainer set up a personalized exercise program for me consisting of 45 minutes of aerobic exercise three days a week to be interspersed with 40 minutes of crunches, weight machines, and free-weight workouts on the other two workdays.

I jumped into it with enthusiasm borrowed from the newness of the company, environment, and job challenges. I hit the health center five days per week, early in the morning, sweating over the machines and showering with the corporate executives (which was very weird). Over time I developed a routine, sipping Gatorade and jamming to loud music while pounding the machines and swinging the free weights. There was a lot of muscle soreness in the first few weeks, then... nothing. I did not lose any pounds. I did not lose any inches or reduce clothing sizes. All that I noticed was that the shortness of breath when climbing stairs or a hill was gone. No other benefits perceived. Blood work did not improve, either. Upon evaluation, I found that I had slowly developed a way to "cheat" the machines - resting a lot of my weight on my arms when working the legs and vice versa. Plus drinking the Gatorade, which is basically salty sugar water, was probably adding nearly as many calories as were being burned. And, most importantly, my waning enthusiasm revealed this absolute truth -
I HATED EVERY SINGLE MISERABLE MINUTE OF IT! So I quit after about 8 months, and I never looked back.

Subsequently I tried a number of diets, all of which worked as long as you were faithful, and all of which were not sustainable - the American norm. About five years ago we found one that might have been workable long term, but six weeks in Hawaii was enough to derail it forever. Now, of course, the diet is a non-issue. We've implemented a complete and total lifestyle change that would have been inconceivable before. Nothing like an imminent threat of death to improve motivation. If God wants to get YOUR attention, let's hope something less radical can work for you! And the diet has been quite successful. Pounds dropping fast, sizes decreasing, energy increasing, blood work the best it's been in years. Dr. Lamm said following the BCG regimen is the best hope to beat the disease, and beyond that diet was the next best thing. Check both of those boxes as being done. His last recommendation was to add exercise. I wrote at the time that this was bad news, and now you know why. Many of you have told me that I would just LOVE the exercise once a routine was established. I already know that this is not true. Some like the social aspect of going to the gym with someone, or even competing to exercise. Being a strong introvert, this is not going to work for me, as proved by multiple unused gym memberships. When it comes to exercise, I want to be alone. (apologies to Greta Garbo)

So a lot of you exercise, alone or socially, and YOU love it. Please don't assume everybody else will be the same. Apparently during times of stress, such as extreme exercise, natural substances called endorphins are released into the body. Endorphins can cause feelings of nausea, and they also can bring a calming, or pain-killing effect. And they are best known for potentially causing the euphoric feeling called "runner's high" or "adrenaline rush." Any examination of scientific literature quickly reveals that these "positive" effects are highly variable between individuals. Sorry to tell all you skinny exercise-people this, but I DON'T GET IT. If anything, I get the opposite of it. And I suggest an eight month trial was plenty of time to give it a try. And don't think I haven't seen you out there, riding your mountain bikes, pounding your treadmills, jogging around the block in any kind of weather. You may be getting high on the inside, but your facial expressions and body contortions look pretty miserable to me! Check out our happily high marathoner on the right... Still, to each his or her own. Just quit telling me that I will love the exercise, because I already know that I will despise it.

Does that mean that I won't do it? Surprisingly to me, even the deadly disease motivator seems to have fallen short on this one. I put some exercise clothing in a gym bag and put it in my truck three weeks ago. My half baked plan was to go to the company's fitness center (scaled down here in Utah, but still quite nice, and free), and try some of the machines out, taking it easy. I recall from 15 years ago that the least-hated exercise routine (and I tried ALL the machines, free weights, aerobics, etc.) was the upright stationary bike. Since then recumbent stationary bikes have been invented. I tried one for a bit last year, and it seemed to hurt my lower back more than the upright ones. Elliptical exercisers are new, but seem risky on the lower back. Still, some experimentation must be done to see what could work. I'm thinking an exercise bike in the basement might be tolerable, to be alone and watch TV, read, etc. while trying to ignore the misery of exercise. But why buy before you try, especially if it's free? In the past few weeks the BCG experience left me a bit tired, and working 3-day weeks kept me pretty busy during the other days. Last week was my first full week back at work.
I took it easy on Monday and Tuesday, and was quite exhausted by Tuesday night. The rest of the work week was much better, and still busy. So by 6PM (or later) all I wanted to do was go home, not go to work out. Next week is a partial week, and should be very quiet. America's Thanksgiving holiday is on Thursday, and most are taking one or more days off. There's plenty for me to do, but no reason that some experimental exercise could not be attempted.

I will never WANT to do it, so wish me luck that I will be able to start the routine and see it through. Getting the circulation up and oxygen intake increased will both be very helpful to fighting cancer recurrence, so it needs to be done. Even if it doesn't end up like the last photo at left, don't expect me to love it!!!

1st BCG Maintenance Series (3 of 3) Final Analysis - November 14, 2008

I'm pleased to report that BCG treatment #3 of 3 for my first maintenance series went much better than expected. Symptoms started later, were MUCH milder, and peaked sooner than the first two in the series. Since my symptoms from #2 (with a 50% BCG dose) were stronger than #1 (at full dose), Dr. Hopkins said we would drop to a 30% dose. He indicated he was reluctant to go any lower than that, and I concurred - barring new published evidence to indicate lower dosages than 1/3 are equally effective. He also recommended taking 800mg of ibuprofen when I got home, and again before bedtime, to counteract the severe cramping I experienced in the right, lower back and abdomen the last two times.

There was a bit of confusion with the staff on how to prepare the reduced dosage. Dr. Lamm had recommended separating the raw BCG (which comes freeze-dried) and then adding 50cc of water. Mask and gloves could be used, but not necessary. Dr. Hopkins was concerned about the dry BCG being an airborne hazard and inhalation risk, so he had them mix the entire dose. Last week they drew out 50% and replaced with water. This week a different technician was working, and she drew out 30% and added water to THAT part and loaded it into a syringe. Dr. Hopkins had some extra work to do. After emplacing the catheter he attached a large syringe (without plunger), and then emptied the smaller 50cc syringe of BCG into that, to let it gravity feed. He explained that he did not want to "push" the solution in, if the catheter was sitting somewhere uncomfortable. I was thankful, but the process was a bit messy and took longer.

Afterward he authorized another cystoscopy, and allowed us to schedule the BCG treatments as well. He had declined to do this last time, so it seems he is becoming more optimistic about the prognosis for success. So now we have scheduled Judgment Day #2 at 11AM on Thursday, January 22, to be followed by three more treatments on the subsequent Thursdays. The early scheduling allowed us to secure earlier appointment times, so any long BCG days will peak before 10PM - which was very inconvenient this time!

Symptoms were pretty mild in the urine output area, and while the cramping was present, it seems the ibuprofen and/or lower BCG dose took the edge off. Duration of all symptoms was similar to last week, but the reduced severity was a VERY welcome surprise. Taking it easy today, and fuzzy brain has not kicked in as of yet. Could still happen one or more times in the next 10 days or so. Details of the side effects may be found at the BCG Maintenance #1 BACKUP PAGE.

Bottom line on this first BCG maintenance series? I feel like I have peed an ocean full. I learned something, Dr. Hopkins (and staff) are learning something, and yesterday was not miserable - albeit not a walk in the park. God is indeed good, ALL of the time!

Getting Ready for BCG #3 of 3 - November 13, 2008

Today is the last of the BCG treatments for this round, then 12 weeks off. Last week's side effects were every bit as strong as BCG #6 of my initial round. I have only heuristic evidence to support my conjecture that my full dose two weeks ago got the bladder up and running, so the half dose last week had no reduced effect. And I suspect that even if we drop to 1/3 dose, which is the minimum for which effectiveness evidence is published, this week will be worse still. I do have hope that we will just stay at 1/3 dose in the future (unless new evidence is published), and so next time MIGHT be better all around. Even if not, I can "tolerate" it. I should have no complaints - my full series of BCG treatment symptoms taken together are not as bad as even ONE round of chemotherapy, and radiation is even worse! That's great perspective, and we should have tremendous respect for those who have gone through that misery. Even so, in the quiet morning before going in for another treatment, it does not mean the day will pass without some unpleasantness.

Last week's treatment packed another surprise. The right lower back sharp pain and cramping was much worse. Dr. Hopkins said it was to be expected. One of the tumors was near the right ureter, and inflammation of the tissue and scar tissues in that region can result in some discomfort. I suppose I'm relieved that it's not a sign of kidney stones. The situation is improved somewhat by standing to urinate, which is not permitted until at least 8 hours after instillation, due to BCG handling protocols.

In any case I was back to 85% by Friday night, and we celebrated by going out for a quiet dinner. Went back to work Monday and hit things hard - we have an unlimited backlog of things to do these days. Same again on Tuesday until 3PM, at which point my brain simply switched off. I could not read through anything of substance, and I could not write anything from scratch. After taking some care, I found that I could cut and paste text and numbers into a document to write about later. By 4:30 I figured the company was not getting their money's worth based on my productivity per hour, so I went home "early" and lay in a dark room for a couple of hours. Slept in on Wednesday morning, and felt very alert mentally for the work day. But I felt physically drained, much like one feels a day or two after recovering from a cold or influenza. All normal BCG reactions, and to be expected. I'd had these symptoms before the day of or the day after a treatment, but having them a full five days later was an annoying surprise. Had a fairly productive Wednesday at work, and felt pretty "normal" by that evening. I'm guessing that this round will be a bit more intense, and the symptoms may bite me throughout next week. Hopefully 10 days from now all will be well again for twelve more weeks!

I will probably wait until late in the day tomorrow before I post the details of this week's BCG experience. Thanks again for all your support!

1st BCG Maintenance Series (2 of 3) & Dosage Compromise - November 6, 2008

In my last update I pointed out how it seemed Dr. Hopkins had missed the thrust of Dr. Lamm's response to his email. Differences boiled down to "AS TOLERATED" versus "UNTIL SIDE EFFECTS OCCUR." I also promised to email Dr. Lamm myself, and I expected him to reiterate his earlier guidance. I believe the email exchange and what transpired next may be of interest to most of you.

Please be advised that challenging your doctor is an exercise in delicacy. Doctors are trained to be confident, and their natural egos are given frequent boosts as they complete training and begin practice. It's important to be respectful and keep in mind that YOU have employed the Doctor as an expert in his or her field. It is a sad tribute to American culture that we so often hire experts and pay for their advice, then discard it whenever it does not suit our (often less-educated or experienced) preconceptions. In an earlier post I had suggested that both doctors could benefit from collaboration and so could both patient sets. The reaction I observed raised my awareness that THREE egos were involved in potential conflict - those of the two doctors, and MINE! Since mine is the only one I can influence, I started there. Trying to be objective and respectful, I prayed for guidance as I composed an email to Dr. Lamm. My primary goal was to summarize all relevant facts succinctly to minimize the time it would take for him to read, understand, and respond to the message. When I was finished, I waited a couple of hours and took a fresh look to reorganize and tighten it up. With I final prayer I sent the finished product, reproduced for you below:

e-Consultation Follow-Up Questions

Hello Dr. Lamm,

I completed an e-Consultation with you on September 1, 2008 (Labor Day) for T1G3 bladder cancer and your summary is attached. I shared it with my urologist (Dr. Scott Hopkins in Salt Lake City), and I asked him to contact you to reach a consensus on BGC maintenance therapy recommendations for my case.

Dr. Hopkins' standard of care is to perform a cystoscopy followed (if clear) by 3 weeks of BCG maintenance at FULL STRENGTH every 6 months for three years, then discontinue.

Your recommendation for my case was distinctly different - increased frequency and duration with reduced dosage: 3 week maintenance BCG reducing the dose to 1/3 and giving up to 3 instillations at 3, 6, 12, 18 and 24 months, then yearly to 6 years, then at 8, 10 and 12 years

Dr. Hopkins shared your reply to his email inquiry with me, which states "...it is OK to continue full strength until side effects occur."

He now plans to give 3 week maintenance BCG sessions per your frequency above at FULL dosage AS TOLERATED, then reduce to half a dose. He defined inability to tolerate as unwillingness to undertake another treatment, or urgency/discomfort making it impossible to work 2 days after instillation. We proceeded with a full dose yesterday and another is planned for next Thursday, November 6. My symptoms were bright hematuria and clots lasting from 3 to 9 hours post-instillation followed by moderate abdominal cramps and general tiredness - no fever.

I think it will be helpful if you could clarify three specific areas:

1) Is there evidence to support that a reduced dosage is as effective as a full strength dose of BCG for maintenance, or any evidence to the contrary? This is the primary area of my concern.

2) What level of side effects would indicate a reduced dosage is in order? I can certainly tolerate much worse than yesterday as an alternative to radical surgery.

3) What are the mechanics of preparing/instilling a reduced BCG dosage? I believe the clinic here has never used a reduced dose, and they may perceive some difficulty and/or risk to the staff regarding the mechanics.

If you determine that your level of involvement with my case exceeds the scope of the e-Consultation, I would be happy to provide an additional consulting fee.

Thank you for your time and consideration.

Steve Kelley
I copied my email address and added home and cell phone numbers after my name. The message was sent Friday around 1PM, and Dr. Lamm sent me the response below at 3:40PM on Sunday.
Dear Mr. Kelley,
I will respond IN CAPS in the body of your email so I don't miss anything.
Unfortunately, I am prohibited from doing any more electronic consults by my insurance carrier, so I apologize for not being able to continue to consult by email on your case.
This does no apply to face to face consultation.
Best regards,
Don Lamm, MD

> 1) Is there evidence to support that a reduced dosage is as effective as a
> full strength dose of BCG for maintenance, or any evidence to the
> contrary? This is the primary area of my concern. ABSOLUTELY,
RANDOMIZED CONTROLLED TRIALS CONFIRM EQUAL EFFICACY (Ith INTERFERON SUPERIOR EFFICACY) AND REDUCED SIDE EFFECTS
>
> 2) What level of side effects would indicate a reduced dosage is in
order? PERSONALLY, WITH YOUR SIDE EFFECTS I WOULD REDUCE THE DOSE TO 1/10TH. REDUCTION TO HALF IS INSUFFICIENT IN MY OPINION.
>
> 3) What are the mechanics of preparing/instilling a reduced BCG dosage?
ONE THIRD, ONE TENTH OR ONE WHATEVER OF THE FULL STRENGTH PREPARATION IS PLACED IN AN APPROPRIATE VOLUME TO YIELD 50 ML OF THE BLADDER INSTILLATE. MASK AND GLOVES CAN BE WORN, BUT IT IS NOT REALLY NECESSARY.
I was dismayed to see that Dr. Lamm had to discontinue his e-Consultations, as I found his advice to be very helpful. It was very generous of him to answer my questions. I checked his website and found this short note, "e-Consultation Services are no longer available." Bad news indeed for those who don't have the time or funds to travel to Phoenix to see him. As I read his email, it seemed to boil down to -
1) Evidence supports that reduced dosages are equally effective (and more effective than adding interferon, which I was not contemplating)
2) One-tenth dose for my side effects - a pronouncement that surprised both Kathryn and me.
3) Just mix it up - no big deal

I trimmed Dr. Lamm's email down to just the facts and sent the following summary to Dr. Hopkins on Sunday evening:

Dr. Hopkins,

I was concerned that there may not be a meeting of the minds between you and Dr. Lamm regarding reduced dosage BCG therapy. I believe your plan is to continue full dosage as TOLERATED, and Lamm's email to you stated "...it is OK to continue full strength until SIDE EFFECTS OCCUR."

In order to save time and ensure clarity, I asked Dr. Lamm to respond to three specific questions. He was kind enough to answer despite advice from his insurer. His response is copied below for your consideration. My only motivation is to engage in treatment that will best prevent cancer recurrence and progression in my case, not to interfere with your diagnostic and therapeutic judgment.

> From: Donald L Lamm, MD
> Date: 11/2/2008 3:41:24 PM
> Subject: Re: e-Consultation Follow-Up Questions
>
> Dear Mr. Kelley,
> I will respond IN CAPS in the body of your email so I don't miss anything. Unfortunately, I am prohibited from doing any more electronic consults by my insurance carrier, so I apologize for not being able to continue to consult by email on your case. This does not apply to face to face consultation.
> Best regards,
> Don Lamm, MD
>
> > 1) Is there evidence to support that a reduced dosage is as effective as a
> > full strength dose of BCG for maintenance, or any evidence to the
> > contrary? This is the primary area of my concern. ABSOLUTELY, RANDOMIZED CONTROLLED TRIALS CONFIRM EQUAL EFFICACY (ITH INTERFERON SUPERIOR EFFICACY) AND REDUCED SIDE EFFECTS
> >

> > 2) What level of side effects would indicate a reduced dosage is in
> order? PERSONALLY, WITH YOUR SIDE EFFECTS I WOULD REDUCE THE DOSE TO 1/10TH. REDUCTION TO HALF IS INSUFFICIENT IN MY OPINION.
> >
> > 3) What are the mechanics of preparing/instilling a reduced BCG dosage?
> ONE THIRD, ONE TENTH OR ONE WHATEVER OF THE FULL STRENGTH PREPARATION IS PLACED IN AN APPROPRIATE VOLUME TO YIELD 50 ML OF THE BLADDER INSTILLATE. MASK AND GLOVES CAN BE WORN, BUT IT IS NOT REALLY NECESSARY.
> >
> > Steve Kelley
Dr. Hopkins responded to me at 3PM on Monday...
Thank you. We will discuss how you want to proceed (dosage) when I see you
this week. See you in the next couple of days.

Scott A. Hopkins M.D.
This polite reply left a lot of room to wonder how Dr. Hopkins really felt about my "interference." I modeled a number of scenarios in my mind over the next few days, none of which was helpful. So today after prayer, devotions, and shower, I did the deep breathing exercises during the hour-long trip to the doc's office.

We were shown into the waiting room about 15 minutes late, and the nurse asked for the normal urine sample and gave me the normal instructions. "Did the doctor say anything about the dosage?" I asked. "Oh, are you the one that had the real bad reaction?" she asked in return. "No. He sent me an email saying we would discuss it based on another doctor's information," was my reply. She assured me she would check with Dr. Hopkins before preparing any BCG. About 10 minutes later he came in and sat down. I opened with an apology for being so much trouble, which he dismissed with a wave of the hand. We had about a five minute candid conversation. He felt that the published information supported that reduced dosages of one-half or one-third were equally effective, but had no idea where Dr. Lamm's one-tenth dosage came from. He also admitted there was no compelling reason to go with a full dose beyond "habit" and his patients being able to tolerate it. I reminded him of the increased frequency and duration that Lamm had recommended being a bigger factor for long-term toleration. He told me that he used to follow a two-year maintenance BCG protocol based partly on Lamm's research, and that he had recently switched to three years based on more recent research, also by Lamm. So he felt the increased schedule (out to 12 years) at my age would indeed support a reduce dosage. I suggested a compromise that we finish out the current series at full dosage, and then go to reduced dosages for the next series. He thought for a second and replied, "Tolerability and going through all three is the most important thing. What were your side effects?" I told him him (since I had excluded that part from the email I sent him), and he immediately said, "Let's go with half a dose this time, and based on how you react, we can re-evaluate next week." I liked that plan, so that's how we proceeded today.

In fairness to Dr. Lamm two things should be noted. First, his current therapeutic regimen is to perform BCG maintenance with dosages that stop just short of producing any side effects. He has gone as low as 1/60th dose that I know of. Second, he has access to more current data from his practice and studies than has been published, and Dr. Hopkins would have no way of knowing about it. Since I am not Dr. Lamm's patient, nor have I signed up to be a subject in one of his studies, I think the compromise is a reasonable way to proceed.

Gloria came in a few minutes later with my reduced dose. I asked if she was going to make fun of me, having pointed out last week that "even little girls" could take the full dose. She laughed and denied that she would consider such a thing. Since the instillate is the same volume (50cc) with half the BCG, the instillation process was not any easier. Dr. Hopkins mentioned that he had me in a vulnerable position and asked whether I was supporting Utah or TCU in tonight's football game, pointing to his bright red Utah school tie. I laughed and told him that Kathryn and I both went to Baylor, so we had no love for TCU from our Southwest Conference days.

The side effects started one hour sooner, peaked faster, are somewhat more severe. They seem to be tapering off an hour sooner. Jury is out on how long they may last. I should probably have spent less time on blog updating and paid more attention to hydrating! Signing off for now, and to the left there's a drawing of Biohazard Man dashing off to his favorite room! As with ANY graphic on the blog, you can click on it for a larger version.

Details of the side effects are posted on this BCG Maintenance #1 BACKUP PAGE.

1st BCG Maintenance Series (1 of 3) - October 30, 2008

I was a little surprised to catch a head/chest cold last week after my "all clear" report - for two reasons. First, my immune system is still ramped up pretty high from the previous BCG sessions. And second, the new diet also promotes health, well-being, and disease resistance. Sure, I was a bit run down from prepping for the unfair audit at work, but I had far less stress about it than many others in my group. I suspect it may have more to do with God sending me a "Don't get cocky!" message, much like Han Solo told Luke Skywalker in the first Star Wars movie (aka Episode IV). It is a lot harder to lean on God when things are going well, so I am quite thankful for the reminder!

For this BCG appointment we arrived at the office on time, but the doc was running late. As we were being shown to a room about half an hour later, Dr. Hopkins stopped me in the hallway and mentioned that he'd received an email from Dr. Lamm. Based on that we were going to proceed at FULL STRENGTH for today's treatment. I was a bit surprised, but pleased that some apparent collaboration had happened. He said he'd like to proceed at full strength for as long as I could "tolerate" it, then cut to a HALF dose. I asked if it had become a test of manhood, and he replied, "This whole deal is a test of your manhood!" and laughed. I pointed out that I could tolerate quite a lot in lieu of radical surgery, and we discussed what the maximum might be. Incontinence and inability to function due to frequency/urgency beyond the instillation day seemed to be the litmus test. This is much worse than I was wanting - yet MUCH better than surgery, or chemo, or radiation. So I resolved to "adjust my threshold of whining" and proceed. The instillation took place without incident - I'm apparently becoming a professional at tube invasions. I asked Dr. Hopkins if he planned to follow both the full dosage and Dr. Lamm's increased frequency - quarterly instead of 6 months. He had forgotten about that part, but thought we should go with the increased frequency, too! So my insistence on collaboration seems to have produced the worst of all worlds - increased frequency, full dosage, and tons of side effects to be expected!

On the way out of the office, Dr. Hopkins stopped me again in the hallway and brought me into his office to get a copy of Dr. Lamm's email. He was eager to point out the part where it stated, "It sounds like you are giving Mr. Kelley excellent care." I agreed and took the copy. It made for interesting reading. Along with providing brief background information, Dr. Hopkins asked the question: "I have typically followed your schedule, but with full dose BCG. I am writing because Mr. Kelley has asked me to ask you if you have any other thoughts."

Dr. Lamm's reply, after the compliment, was, "The data in favor of our 3 week maintenance schedule continues to increase. Richard Sylvester has recently presented data from the EORTC showing that BCG using the 3 week maintenance schedule reduces not only recurrence, but metastasis and cancer mortality as well. Remarkably, it was most effective in the intermediate risk patients, those without CIS."

This is all well and good. The next bit did give me some cause for concern:
"We do reduce the dose to 1/3 for maintenance now, but it is OK to continue full strength until side effects occur."
The problem here is one of interpretation. Dr. Hopkins took the statement above to indicate that full strength was OK until it could not be tolerated (i.e. to the point where I would refuse to take another BCG treatment). Clearly Lamm states until "side effects occur." I already had side effects from last time, as evidenced by his writeup, "He is now post 6 week induction BCG, which was tolerated with moderate symptoms." I am, of course, presuming that side effects = symptoms. And I certainly had a great display of symptoms today.* I did pour myself a beer at 7 PM, thanks to inspiration from my man Doug in Michigan. Symptoms this time were not worse than the last, but rather about 75% of the distance between Intitial BCG #5 and Initial BCG #6.*

I plan to email Dr. Lamm myself, with his report on me attached to remind him of his past work, plus a detailed description of the day's symptoms. And I shall ask him directly whether he believes that such symptoms indicate time for a reduced dosage. Given the difference between frequencies (Hopkins semiannually and Lamm quarterly) and dosages (Hopkins 1/2 and Lamm 1/3), what exact dose and frequency he recommends, and what side effects or symptoms are acceptable. I expect him to reiterate what he provided earlier:
"I would recommend reducing the dose to 1/3 and giving up to 3 instillations at 3, 6, 12, 18 and 24 months, then yearly to 6 years, then at 8, 10 and 12 years."
Anyone want to take that bet? Since we are just now at 3 months, there's a long road ahead. And I want very much to get it all correct!

*Details are described on this BCG Maintenance #1 BACKUP PAGE. Details from the Initial 6 BCG episodes are HERE.

More TURBT, but NOT for Me! - October 30, 2008

In a couple of hours I will have my first of three weekly BCG treatments for my first maintenance therapy. This was the outcome I was hoping and praying for. While it will not be a lot of fun, it's far preferable to another surgery, and certainly better than radical surgery. I will put details on the blog later.

A fellow in Toronto, HK, contacted me a couple of months ago with questions about BCG - whether it would hurt or not. I advised him that the instillation should not hurt, especially if he could relax and use the deep breathing techniques. The side effects are highly variable, and sometimes there is a lot of discomfort. On his last TURBT surgery they did "bake" his bladder for a couple of hours with Mytomycin, which is the standard of care. He then went through six courses of BCG and re-inspection, basically the same treatment and timing as my case. His BCG symptoms were worse than mine, which is not particularly meaningful for prognosis. Yesterday he had his post-BCG cystoscopy. His outcome was the opposite of mine, and new cancerous growth was observed. He is going to have another TURBT next week, on Wednesday, November 5th, and he would benefit a lot from our prayers and support.

This morning he sent me a link to share with all of you. The site is prepared by the European Association of Urology, and it has a lot of the basics of bladder cancer explained and diagrammed. Additionally it shows graphics, photos, and quick-time movies of most of the procedures used to treat the disease. As such, sections of it can be pretty high on the gross-out scale. So be warned - it's not for for the squeamish! Check it out for yourself by clicking on the link for Management of Superficial Bladder Cancer.