Just over three weeks ago I posted the successful results of my Judgment Day cystoscopy and praised the merits of modern technology - a High Definition monitor and a more flexible, smaller diameter probe. In the three short conversations with Dr. Hopkins since then, I learned more about it. While it certainly is High Def and more flexible, the doc claims it is exactly the same size (14 gauge French) as the other two he has used on me. They have three scopes and the staff rotates them around on some basis unknown to him. While he claimed (jokingly) that it was his excellent handling of the scope that produced zero symptoms afterwards instead of several hours pissing fire and 36 hours total recovery, it was probably a combination of several things: My expectations that it was smaller, my relaxed state via deep breathing (which is normal), the presence of the High Def monitor to take my focus and concentration away from the area of discomfort, the increased flexibility of the Storz scope probe, and the wider High Def camera that allowed him to inspect the entire bladder lining and ureter openings more quickly with fewer passes. While I would still like to take a micrometer to the three scopes and see for myself, they are not going to let me do it! Truth be told, he prefers the oldest (and least flexible) scope with the optical viewer (no camera or monitor). He says the ones with the monitors are upside down "The top of the screen is not the top of you." I absolutely prefer the monitors as my all-consuming focus is on the screen rather than what is happening below my waistline! Moving on to the treatments - as I mentioned in my last post, the non-invasive nature of the new scope enabled me to accelerate the BCG plan, but (as you can deduce from the dates in the post title) I had to skip a week between #2 and #3. This was preferred to being filled of toxic bio-cooties the day before our 28th wedding anniversary! And this is the first time I have had a full year off between BCG maintenance treatments. The big question was whether the intensity would continue to build, as it had in the past. The answer to this big question boils down to good news and bad news. Good news - the treatments and recovery were slightly better than the last series. While the urinary symptoms were nearly identical to the minute (see charts below if not squeamish), the day after was, in general, MUCH better than the last few times. The bad news is that the day after symptoms of the past were, in part, the result of an error on my part - an error now hopefully corrected for the future! My pursuit of hydration was (as is my style) so single-mindedly focused that I was exacerbating evening and day after symptoms with the additional misery of electrolyte depletion. I shall publish a revised hydration/electrolyte plan in my next post. Speaking of BCG, I have now completed the initial set (of 6) and six additional maintenance sets (of 3). Checking my calendar, I have (if all goes well) six remaining maintenance sets (of 3). So that makes me halfway through maintenance and 57% complete with BCG. Of course the frequency spaces out, so the timeframe is just the opposite. One set per year for three years, then one every second year for three final sets, making the last BCG around the end of September, 2020. If all goes well and there is no recurrence, I will be 62 years old for my last set. Maybe they will invent a pill or something before then!
So now for the BCG Report - Round 1 was scheduled for 10:30 or so, which (as expected) turned out to be 11:15AM. Note, the special handling period and super hydration period is 8 hours, and the initial recovery is another 3-4 hours. As it turned out, I did not get into bed for some sleep until after Midnight, so imagine what that would have been if I had accepted the schedule change to 3PM. The doc was dressed in his casual Friday attire and in a very good mood. Installation was completely uneventful, as was the trip home. The urinary symptoms, surprisingly, were almost to the minute exactly the same as the first round a year ago. The post handling and recovery were much worse, and that gave me a "Eureka moment." From the charts below (don't enlarge them if you are at all squeamish - 3 out of 10 on nausea scale), you can see that I had a one-time, very severe urinary symptom at about hour 9 last year. At the time I attributed the occurrence to my failure to continue hydrating enough, ramping down to almost zero instead of something more gradual. I compensated by massively hydrating and spent all night peeing instead of sleeping. I resolved to learn my lesson and do better this time. And so I did. I kept my hydration at 2 quarts the first hour, 1 quart the second hour, and 1 quart per 30 minutes or so thereafter. (1 quart = 947ml for those outside the USA). Then I ramped down to 1 quart every 45 minutes after hour 8, and slowly stepping down afterward. Two surprising things happened. Despite my accelerated hydration, the SAME symptom appeared at essentially the same time, and I felt MUCH worse that night and the following day. Very odd for round 1. The next morning I felt so bad that I asked my wife to run to the corner store and buy me some Gatorade. One hour after finishing a quart of Gatorade, I felt much better - moving from horrible to just blah. This lasted for several hours, and I had no appetite at all until 3PM. The only thing I had eaten the day before was a bowl of veggie lentil soup around Noon. I deduced that my dedicated hydration had not only failed to improve the urinary symptoms, combined with the frequent urination it had also washed the electrolytes out of my system! I decided to add some Gatorade to my hydration plan the following week for Round 2. See the detail charts below for Round 1 for this year and last year below. Click to enlarge (3/10 on the squeamish scale).
Round 1 This Year
Round 1 Last Year
BCG Report for Round 2 - Scheduled for 8:30 (the earliest possible time) and happened at 8:50. Again the installation was routine. The doctor and most of the office staff were decked out in their University colors - Blue for Brigham Young University and Red for the University of Utah. My doc was wearing his red booster shirt, and was rewarded the next day with a decisive victory in the big Utah football rivalry. Urinary symptoms were again identical to the previous year, so all was good there. I rotated in 1 quart of Gatorade every 3rd or 4th quart, but found it to sit in my stomach like a lead brick, so I had to slow it down a bit. Still, all progressed normally, and you can see from the charts below (unless you are squeamish) that the symptoms were right in line. Even better, the recovery time the next day was MUCH shorter! Click to enlarge (3.5 out of 10 on squeamish scale).
Round 2 Last Year
Round 2 This Year
Round 3 was more of the same - scheduled for 8:30 and administered at 8:55. I started sipping Gatorade right after lunch and continued throughout the day. Symptoms were right in line with last year, perhaps a bit less. If less, I imagine it was as much from the extra week off as from the Gatorade. In any case the day after was less miserable, thanks mostly to the Gatorade. I think I should probably add even more, as the near-colorless urine all through the evening and next day is indicative of electrolyte shortage. More on this in an upcoming post! See the data below (5 out of 10 on the squeamish scale).
Round 3 Last Year
Round 3 This Year
I presume most of you are more clever than I am, having beer or some other form of electrolyte input during your BCG days. As always, let me know if you have any questions or concerns. Comments welcome below.
Need to contact me? Use the photo-link near the bottom of this column.
Had an interesting annual checkup - no cysto, but ultrasound and blood/urine tests. Bottom line ALL CLEAR now 14 years and counting! God is good!
My parents were from a generation that feared seat belts. In May of 2013 they were both ejected from their vehicle (my father would have said "thrown clear") and did not survive. Automobile safety technology has dramatically improved since the 1950s and 1960s.
People, if you are traveling over 35mph, WEAR YOUR SEAT BELTS!
BLADDER CANCER ROLL CALL
Recent Results
2022
ME! - Steve K. in Bodrum, Türkiye ALL CLEAR on June 10. - 14 yrs
Wil S. in Chicago ALL CLEAR on March 22. - 15 months HK in Toronto ALL CLEAR on Feb 5. - 13+ years
2021
Steven S. in Tennessee ALL CLEAR on Oct 27. - 10 years Roy B. in Alabama ALL CLEAR on May 4. - 9 yrs Scott in South Carolina ALL CLEAR on April 20. - 6.5 yrs
2020
David F. in England ALL CLEAR on October 2 - 14.25 yrs and finished with cystos now!
2019
Julie M. in Illinois ALL CLEAR on June 15. - 8+ yrs
Roy B. in Alabama ALL CLEAR on June 24. - 8 yrs
2018
Ed B. in Washington ALL CLEAR January (but battling lung cancer now). - 9 yrs Bladder Cancer Free Patrick P. in LA area ALL Clear on November 28. - 9 years Sebastián in Argentina ALL CLEAR on October 9. - 5 yrs John B. in Minnesota ALL CLEAR on May 24. - 5 yrs Doug B. in Tennessee ALL CLEAR on April 7. - 3 yrs Ben F. In Louisiana ALL CLEAR on Feb 22. - 6 yrs
Need to contact me? Use the photo-link near the bottom of this column.
Short Summary of My Situation
On March 31, 2008 I was diagnosed with bladder cancer. As a non-smoker, at my age, with no family history of cancer on either side, I was quite surprised. The cancer was T1-G3 and Non-Invasive. It's not immediately life threatening, but my bladder is still at risk. I have been CANCER FREE via surgery for 14 years now, an important number - having exceeded both the two year ultra-high-risk and 10 year medium-risk recurrence periods. Less than 2% chance of the cancer returning now, not zero, so lifetime annual cystoscopies are in order. In addition I have completed 6 weekly treatments of initial BCG immunotherapy and nine 3-week maintenance rounds with moderately unpleasant side-effects. I have implemented radical dietary changes (limited pork, shellfish, sugar, ZERO artificial sweeteners (except stevia), processed flours, or chlorinated water), take several vitamins and supplements including the Budwig Flax Oil Cottage Cheese (FOCC) mix, resumed PectaSol-C MCP,and added regular light exercise.
Every year my doctor will visually inspect for new cancer growth via cystoscope, or a combination of ultrasound with blood and urine tests. While the probability of recurrence is not zero, the risk of disease progression is dramatically decreased now. The downside picture is merely a nuisance. Annual checkups for life. And any new cancer leads to another TURBT surgery to remove and analyze what's there. Probably nothing more beyond increased surveillance after that.
I have pursued an analytical approach to Complementary Therapies - those that can be done IN ADDITION TO what the doctors are doing. There are over 200 "unproven" approaches out there, and some work sometimes. I have conducted an objective, systems-based analysis many of them to determine which ones work under which conditions, looking for common, science-based threads. My current set of things I am doing is described in detail in this post.
All diagnosis, prognosis, and medical treatment recommendations have been validated with second opinions from a urologist in Indiana and Dr. Lamm in Arizona.
I am a great fan of life and doing something useful with the limited time we have on this earth. I enjoy my church, my home life, and my retirement.
My hobbies include extensive international travel, experiencing new cultures, and consuming fine food and wine (both at home and dining out).
On March 31, 2008, I received the very unwelcome news, "You've got bladder cancer!"
I was born in 1959, and I am a white, male, American. I married at age 24, and in October of 2008 we celebrated our 25th anniversary. We have no children, and that's OK with us. I had a vasectomy in 1999, so no changing minds on that decision - and the docs dismissed that early as any type of contributor to the situation.
I am six feet, zero inches, and was 255 pounds when all this started, but weight decreasing now thanks to surgeries and this wake-up call. I am NOT saying cancer comes from being overweight, but weight exacerbates all other problems. (Down to 240 pounds as of 9/1/08, down to 230 pounds as of 12/31/08, down to 220 as of 5/15/09, but back up to 230 and holding since...)
My blood pressure (checked and tracked weekly) runs a hair high - 130/90. Been steady at that level for many years. Been higher lately - stress will do that.
I don't smoke, and never have smoked anything, including marijuana. The docs had some problem believing me, as smoking is a strong indicator for bladder cancer. I tried asking if I should take it up now to break even, and they finally let it go. I find the whole idea of smoking distasteful, having suffered in a home where both parents favored unfiltered Pall Malls. The docs claim that secondhand smoke at home from birth through my high school years would not be a factor.
They also suggest that exposure to radiation and chemicals can cause this. I worked in a chem lab at college and there was stuff around; but my exposure was not that much and I never rubbed my groin on any of it!
I do enjoy an occasional alcoholic drink - usually a couple of glasses of wine with dinner or maybe a beer or two with pizza or during a televised sporting event. My use is less than daily and almost never more than two in any day.
I was diagnosed with gout in 2004. Gout is a crystallization of uric acid in the joints - primarily in the left big toe. These crystals cause irritation and inflammation - then BIG TIME PAIN. Gout supposedly comes from eating rich foods and poor circulation. I may also have a recessive gene for gluten sensitivity which may have contributed; but I have not as yet investigated this. I controlled the gout successfully for a while by super-hydrating (one gallon plus of fluids per day) but 4 international trips proved that I could not maintain or control this outside of home and an air-conditioned office. So in 2006 I began taking 75mg of allopurinol daily. This is also NOT a factor for bladder cancer. Subsequently I changed my diet and lifestyle and lost a lot of weight. Now I am not taking any medication for gout, nor have I had an episode in many years.
Just over three weeks ago I posted the successful results of my Judgment Day cystoscopy and praised the merits of modern technology - a High Definition monitor and a more flexible, smaller diameter probe. In the three short conversations with Dr. Hopkins since then, I learned more about it. While it certainly is High Def and more flexible, the doc claims it is exactly the same size (14 gauge French) as the other two he has used on me. They have three scopes and the staff rotates them around on some basis unknown to him. While he claimed (jokingly) that it was his excellent handling of the scope that produced zero symptoms afterwards instead of several hours pissing fire and 36 hours total recovery, it was probably a combination of several things: My expectations that it was smaller, my relaxed state via deep breathing (which is normal), the presence of the High Def monitor to take my focus and concentration away from the area of discomfort, the increased flexibility of the Storz scope probe, and the wider High Def camera that allowed him to inspect the entire bladder lining and ureter openings more quickly with fewer passes. While I would still like to take a micrometer to the three scopes and see for myself, they are not going to let me do it! Truth be told, he prefers the oldest (and least flexible) scope with the optical viewer (no camera or monitor). He says the ones with the monitors are upside down "The top of the screen is not the top of you." I absolutely prefer the monitors as my all-consuming focus is on the screen rather than what is happening below my waistline!
So now for the BCG Report - Round 1 was scheduled for 10:30 or so, which (as expected) turned out to be 11:15AM. Note, the special handling period and super hydration period is 8 hours, and the initial recovery is another 3-4 hours. As it turned out, I did not get into bed for some sleep until after Midnight, so imagine what that would have been if I had accepted the schedule change to 3PM. The doc was dressed in his casual Friday attire and in a very good mood. Installation was completely uneventful, as was the trip home. The urinary symptoms, surprisingly, were almost to the minute exactly the same as the first round a year ago. The post handling and recovery were much worse, and that gave me a "Eureka moment." 
From the charts below (don't enlarge them if you are at all squeamish - 3 out of 10 on nausea scale), you can see that I had a one-time, very severe urinary symptom at about hour 9 last year. At the time I attributed the occurrence to my failure to continue hydrating enough, ramping down to almost zero instead of something more gradual. I compensated by massively hydrating and spent all night peeing instead of sleeping. I resolved to learn my lesson and do better this time. And so I did. I kept my hydration at 2 quarts the first hour, 1 quart the second hour, and 1 quart per 30 minutes or so thereafter. (1 quart = 947ml for those outside the USA). Then I ramped down to 1 quart every 45 minutes after hour 8, and slowly stepping down afterward. Two surprising things happened. Despite my accelerated hydration, the SAME symptom appeared at essentially the same time, and I felt MUCH worse that night and the following day. Very odd for round 1. 
The next morning I felt so bad that I asked my wife to run to the corner store and buy me some Gatorade. One hour after finishing a quart of Gatorade, I felt much better - moving from horrible to just blah. This lasted for several hours, and I had no appetite at all until 3PM. The only thing I had eaten the day before was a bowl of veggie lentil soup around Noon. I deduced that my dedicated hydration had not only failed to improve the urinary symptoms, combined with the frequent urination it had also washed the electrolytes out of my system! I decided to add some Gatorade to my hydration plan the following week for Round 2. See the detail charts below for Round 1 for this year and last year below. Click to enlarge (3/10 on the squeamish scale).
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