Updates From Around the World - April 24, 2010

Bladder cancer continues to emerge to be discovered in new people every day. Judging from the people who hits this blog and the links they investigate, I surmise that most of you seem to be finding potentially helpful things out in cyberspace from my links, discourses, rants and so forth. On occasion I get some feedback indicating that this is the case:

Dale G. comment: I just wanted to say thank you for your blog. I just learned this morning that I have bladder cancer, and there is such a tremendous amount of information here - it's very helpful to be able to read about someone else who's gone through this. Thank you for sharing your experiences.

Chris S. comment: Thanks for the blog. Will start this in a few weeks and after reading this I have no worries. Best of Luck!

Some even list their entire lifestyle, giving me some encouragement. This was how one lady signed a note alerting me to an incorrect link (which I was happy to fix).
Thank you for your web page.
Jenn Charlene J.
T1G3 Non-Invasive
BCG 5 of 6
Budwig FOCC
Beta Glucans
Green Tea
Minimized meat/organic chicken
Organic veggies

So I will continue here as long as it seems to be helpful to you out there...

As for our regulars, we have some March/April updates.

HK in Toronto had his cystoscopy on April 6 and was found to be all clear. This news was a welcome relief, as HK is one of the few unfortunates that absolutely could not tolerate the BCG treatments. He had unbearable pain which endured for months afterward. The Canadian doctors finally determined that he has a condition called horseshoe kidney, which basically means that he has one large, connected kidney rather than two. Most likely the two kidneys did not separate before birth, and continued to grow as a unit. The doctors don't think the condition causes his pain, and have prescribed some pretty heavy drugs for enlarged prostate and inflammation. In any case his life now continues at a state of reduced misery. We can all be thankful, and should hope and pray that his cancer does not recur. Not sure what treatments they will consider instead of BCG, should he have a recurrence and another TURBT surgery.

Robert S. in New York continues do well, despite the disadvantage of receiving his care from the smartest doctors in the universe at Memorial Sloan-Kettering. The problem with the smartest people is that they presume there is nothing more to learn, so Robert (even though he all but demanded it) did not receive a chemo bake post-TURBT, nor will he receive BCG maintenance. The reason given for the latter is that "most patients cancel before three years." By "cancel" they mean they can't tolerate the treatments, not mortality! While this was certainly true 20 years ago, reduced frequency and dosage treatments have been the norm since at least 1999. So while the geniuses at MSK don't have "sufficient data" in their own little bubble, plenty of peer-reviewed, published evidence is available in the US. I suggest we may need to view Wall Street doctors with the same skepticism we now use for Wall Street bankers. In any case I am glad Robert is spared the misery of the treatments, and I hope he is spared any recurrence of bladder cancer. As of April he is 16 months cancer-free, and counting!

Robert passes on the following tip for those using the Budwig Flax Oil and Cottage Cheese (FOCC) diet.
"Learned a trick for the cottage cheese cocktail. I buy the pre whipped Friendship cottage cheese--drinks up the flax seed oil really nicely and seems the same as when I use the hand held blender-without the aggravation." It turns out that pre-whipped cottage cheese is only readily available on the East Coast of the USA, so the rest of us will have to continue to make our own!

Ed B. in Washington State reports ALL CLEAR from his cystoscopy on March 24, marking six months and counting... He has some enlarged prostate and elevated PSA to deal with, and for now the doctors are prescribing dietary approaches rather than medicine. He is also battling COPD/emphysema. Ed admits that a lifetime of smoking and poor diet may have had a contributing effect.
"I was in the Air Force for thirty three years and can still remember the free Old Gold and sometime Lucky Strike cigarettes that the Red Cross gave us. You probably know that there is a correlation between tobacco use and bladder cancer. Well the lung issues are many times more that correlation. So I have both." We know that it's never too late for a radical lifestyle change to be effective, so we are sending positive waves in his direction!

David F. in England was shocked to have a tiny tumor discovered on what was to be his final hard cystoscopy (with general anesthesia) and biopsies. The good news is he returned home on the same day of the procedure, for the first time ever. The bad news is that he was ready to be "finished" with everything but routine annual flexible cystoscopies. But now more BCGs and biopsies are probably in his future. As usual with the British system, he has to cool his heels for a couple weeks before they can see him, even though the follow-up appointment was scheduled "sooner rather than later." The tumor was removed and presumably sent for analysis, so there is a chance that it was not cancer. We shall all wait together to see what the consultant says.

Asya in California had all of us men convinced that we were wimps and whiners after her TURBT experience. Sadly, after convincing herself she was cured after 6 months, she had a recurrence at 9 months. Had another TURBT and handled all with aplomb again. We hope for the best for her as her cancer-free clock was re-set on March 12.

Jeff in the UK reports,
"Thought I'd let you know the consultant told me today that the BCG has worked and that I am clear. I'm due to start boosters next week. A problem occurred midway through the BCG treatment in that one of my ureters was blocked by scar tissue, from earlier treatment, and I had to have a stent fitted. It only adds to the discomfort. They are looking at options to enlarge the opening and I should have something done before Christmas. Anyway I thought I'd let you know that all the 'discomfort' has been worth it, for me at least."

And Larry in St. George, UT (practically a neighbor) left a comment on a very old post, so most of you probably did not get to see it. I thought it was worth re-printing here:

Thanks for the blog and your story which makes me feel I am not the only one going thru this. After surgery in August to remove the T-1 aggressive tumor which had not invaded the muscle wall, I followed a 8 week regimen of BCG followed by a scope. Everything was OK. In the interim I had my annual physical which showed a spiked PSA. My urologist was concerned but said BCG sometimes has an effect on the prostate. At that point I thought I had bladder cancer AND prostate cancer. Before we started the 3 week treatments, I had another PSA which was normal. Then I started the 3-week series in Year 1.

The first scope a week ago, showed the tumor had returned. The urologist cut a specimen, told my wife to expect another TURBT the following week and asked to see us three days later after he received the pathology report. We were scared out of our minds. I'm sure there were a lot of prayers were said in my behalf when close friends and family learned. When we returned to the Dr's office, he told us that there was no tumor!! It was a small amount of the BCG materials that had stuck in the bladder. He assured us there was no danger of sepsis. Thanks be to God! We went from scared to giddy. Now a week later, I have decided that as much as I hate the BCG treatments and the way they make me feel afterward, I welcome them as the only alternative.

I have never been a person who puts much stock in "karma" but.....the rest of the story. In the 1980's, I was the first employee of a non-existent cancer center at West Virginia University Medical Center. My goal was to raise enough private funds to convince Sen. Robert Byrd to make large amounts of federal aid available to build the center. I did what I was supposed to and Sen Byrd delivered. Now the Mary Babb Randolph Cancer Center is a large fully functioning center. Even in the early days it focused as much on research as it did on treatment. A young researcher joined us in those first years. My job at that point was to understand enough about cancer research that I could translate it into layman's language for potential donors. This young researcher was doing something with bovine udders and it had to do with bladder cancer. All this was still in my faint memories 25 years later when I started researching what BCG was and how it worked. Yes, Dr. Don Lamm was that researcher. My urologist states that he is the world authority on BCG. So what goes around comes around...positively in this case. Thanks for the opportunity to share.
So we have good news and not-so-good news, but all are looking forward to positive outcomes and a cancer-free future. Stay tuned to this space for further updates.

4th BCG Maintenance Series #3 of 3 - April 10, 2010

Wow, a blink of the eye and it's been over two weeks since my final BCG from the 4th maintenance series. I suppose it's good that life has gone on and I am 95% recovered from the experience. As I have said (and the reality of which has not fully sunk in), I have no more reason to let any doctor handle my private parts again until September. Five full months of... what? I have not had this much timespace to plan anything at all since before the beginning of 2008. It still feels very unreal. My prior reality is still gone, and cancer and treatments have been my full reality since symptoms and diagnosis. Now that reality can slowly be supplanted by a new one. Not that we can discard the cancer stuff and move on - treatments continue (with decreasing frequency) until the end of September in the year 2020, and that's IF ALL GOES WELL. If not, more surgery and perhaps an extension of that date. Best not to dwell on it, but foolish to ignore the possibility. My friend David F. in England goes in Monday for a final sweep - full anesthesia and multiple biopsies. A night in the hospital and an interminable wait for the results. Odds are decent for a clean report, but he knows it's not a sure bet. His protocol will pronounce him finished after 4 years if all goes well. I wonder if my regimen of milder suffering for longer is worse than his high intensity treatments for a shorter time - if 4 years can ever be considered short!

We had a late-ish appointment this time for the BCG - 10:15. As the doctor answers questions and addresses any complications during the morning, it generally means that later appointments are much more likely to be delayed. And so it was this day. A longish wait in the very busy lobby waiting room, and then finally shown to the treatment room at 10:50. Urine sample given and cleared, and the nurse (after checking my 1/3 dosage) asked me to get ready on the table. As a veteran to all this I inquired if I was next, only to find that there were 2 others before me - about 20 minutes more wait. I asked if she could let us know when next. A tiny look of annoyance crossed her brow before agreeing. It is not a big deal for them, as they put a magnetic sign on the door to signify who is next - always staying a step ahead of the doctor. I settled in for the wait and was surprised 30 seconds later when Dr. Hopkins strode in and exclaimed, "You're not ready!" I responded, "I'm not next." He indicated that he knew that, but did not want to keep me waiting, since I was a veteran at all this and would be quick. He was correct in his observations, and I had dressed for the occasion in sweat pants and a loose surgical scrub shirt. So I made myself ready and assumed the position (supine) on the table before he had his hands washed and gloves on!

Had the instillation completed quickly at 10:59, saving us at least half an hour of waiting. He then realized it was my last trip for a while, and thoughtfully paused to look at my upcoming schedule. We agreed to delay the CT scan from the end of August until the end of March next year. We also discussed moving treatment days from Thursday to Friday, since my company now considers these medical events to be "Vacation" rather than "Illness." He works in the office on alternating Fridays, with surgery at a smaller hospital on the others. We set up a plan to have an exam on Thursday, then BCGs on Friday, Thursday, and Friday following - consuming 5 vacation days instead of seven. I take the entire day of the exam off, not because of discomfort (though pissing fire is no fun), but the mental stress makes me pretty much worthless for work. Dr. Hopkins also told us that his family would be traveling to China to adopt a baby boy with a medical problem late in the summer, and that trip may cause a month delay in the treatments. No way to know before it happens. Anyhow, with this plan in mind we proceeded to the front desk to schedule it all in. We found that fitting the plan to the office schedule was difficult anyway, so we ended up scheduling the second of the three BCG treatments with one of the physician's assistants - Liz. She did an instillation before and did a professional job despite my discomfort with the situation. This approach seemed better than a radical reschedule, so it's the plan for now. In any case we will not be dealing with Regan, the ignorant and incompetent other PA in the office. The updated treatment calendar is below:

And now back to my original theme - is it better to feel horrible for a short time, or just be miserable for a longer time? This set of choices in reality gives us a wonderful illustration of the Morton's Fork conundrum. Both choices are pretty much equally bad. My BCG response seems to have migrated from the former (truly awful for a day) to the latter (mild misery for 2+ days). While the pragmatist in me might prefer to get it over with quicker, the rational part of my brain tells me that the slower route is more consistent with most people and indicates that the BCG is working as desired. While the first two treatments of this series were pretty benign, the third was a full blown episode of "malaise" - just like happened in the last series. Symptoms started sooner and lasted longer. But nothing awful. And 2 days later back to 80%, 2 weeks later 95%. Even the tiredness has subsided, and I can go back to working 10 hour days (most days) and even consider restarting the hated exercise regimen. The symptom details are more than vague discomfort, but only about 1/10 on the reader nausea scale. The non-squeamish and curious among you can click on the table below to enlarge:

As to what to do with the free time, summer vacations and long weekends traveling and doing something seem to be in order. I have to make sure work gets taken care of, and my attitude needs to relax a bit to even begin contemplating having fun and doing "normal" things for a while. It is a great problem to have!