New Year - Path Ahead - A Good Story - January 3, 2009
It feels a bit odd typing in 2009 for the date. Last year went by quickly. Busy with work and work related travel through March, surgery in April and again in May, BCG in July/Aug and Oct/Nov. Only a few moments to work, play, and breathe in between! Now what's in store for this year and beyond? As most of you know, I have been cancer-free since May 22, 2008 - two days before my 49th birthday. While it was a nice present to have, it's not been very long in the big scheme of things. Except for a very few close friends, most of the folks that I work with and socialize with have taken the news of my cancer diagnosis the way I used to - not wanting any details, and desperately eager to receive any news along the lines of the cancer is now ALL GONE. That news is greeted with relief, and again no desire for details, as the only other options must surely involve a premature death and other unpleasantness. Having recently "been there" attitude-wise, I think I can understand it. So those of you in that category should continue to be assured that the prognosis is good, have a happy new year, and skip ahead to the last paragraph to read the very encouraging story I got from a new contact in Canada last week.
The rest of you will want to understand that Bladder Cancer is a dogged enemy. Chances of recurrence are extremely high. That's why radical surgery has the best survival statistics, albeit with severely compromised lifestyle (mostly not evident to the public). For Grade 3 disease, which is what I had, the stats show something like 80% chance of recurrence within five years. Only after that can one begin to breathe a bit easier, and annual inspections FOR LIFE guarantee that I will never be able to rest assured that it's ALL GONE. That fact is not so bothersome, because the name of the game in managing any serious long-term disease is to stay ahead of it - to postpone mortality from that cause until another (hopefully "natural") cause does the trick. If I can avoid recurrence for two years, the prognosis for five years is improved. So for breathing easy, there are six months done and eighteen more to go, then another 3 years before I can fully "relax." Does this mean that I will be able, after 4.5 years of "all clear," to go back to my sugar-laden fried food and chemical preservative rich diet? I doubt it. For one thing, in addition to BCG and prayer, diet will be the single biggest contributor to avoiding recurrence. The diet is intended to stop "pushing the buttons" that could trigger cancer and instead eat things that show evidence of actual cancer fighting. So abandoning it seems risky and unproductive. And what of the much-hated exercise? I suppose that continued "all clear" signs will provide the positive motivation I need to continue. And, of course, there are other benefits, especially for the heart, which is something that I was already at risk for before all this cancer business started. So it continues - I went today. And I hated it.
What's the path ahead for 2009? We start the year with another cystoscopy (visual inspection) in less than three weeks on January 22. These medically non-invasive (albeit personally VERY invasive) procedures continue quarterly for the first two years. If clear, we follow that with three weekly BCG treatments, then wait until late April and inspect again. If all clear then, no BCG treatments - they space out quicker than the inspections. Next re-inspect in July with 3 more BCGs, then October inspection only, and done for the year. Quarterly inspections continue in 2010 in January, April, and July, then go to every six months for a while. If ANY cystoscopy shows anything of concern, there may be a biopsy in the office, but more likely I shall have to get a third TURBT surgery to see what it is. Based on lab results, other more drastic surgeries will likely follow - and it's best for all of us NOT to focus on that outcome at all. Having a positive attitude about prognosis has a good track record in the cancer game. So all of you can help keep me on track with that. Be advised that having a positive attitude about exercise is not a requirement...
In other news I got a comment posted to the blog last week from Phil K. in Canada. He was recently diagnosed with bladder cancer and just had a TURBT last week. The doctor's impression is that it's a small, very low grade tumor, and that Phil will not have to do any BCG or any follow-ups except the occasional joy of cystoscopic inspections. He was pleased to hear that my diet includes chocolate (70% or greater) as a cancer fighter. There's been quite a lot of bladder cancer in his family, but all the outcomes have been good. Here's some of the story in Phil's own words: "My father had it, and so has my sister. Both of them had TURBTs and my father had three LARGE tumors removed that were higher grade and he was tumor free for nearly 6 years. Another TURBT removed it. My sister has had one removed, and goes for her regular checkups. I'm taking Vitamin C, Cod Liver Oil, Vitamin E and Flax Seed Oil. I was told that chocolate is a cancer killer and that I should eat broccoli, vegetables and a higher fibre diet and drink plenty of fluids. (I think I'm going to float away). I am avoiding refined sugar, caffeine, and sugar substitutes when possible. I'll be checking your blog and staying healthy."
So there are lots of good bladder cancer stories out there. Their lack of drama makes them poor candidates for blogs, which perhaps explains the absence of good blog success stories. Stay tuned here for more good drama!
4 comments:
Anonymous
said...
I, too, heard positive thoughts and images contribute to good outcomes - some add mentally creating images of 'beating' cancer cells. Maybe you can invent a treadmill that works like a video game where the longer the distance/harder the exertion, the more cancer cells on a screen shrink!
Hey Steve, glad to hear you are keeping up the healthy diet and doing the exercise in spite of how you hate it. I could take some lessons from you in that department! I hate gym type exercise but I love being outside, so I try to make my exercise fun and thus get it without trying (if you know what I mean!) For me, hiking is easy. It's doing sit-ups and push-ups that I find boring. I hate repetition, but that is what exercise is all about!
Hi Steve. I made a comment yesterday (1-24) but do not believe it was forwarded. I was diagnosed with bladder cancer in October 2008, had a TUR on 11-11. Have finished 3 BCS with little after effects (some blood on day one and two; urgency for a couple of days.) I am planning on a Dr. Lamm-type vitaman regimen soon.
I will continue to follow the blog -it has a lot of good, sound information. Thanks for starting it.
Thanks TK and Kathie, and welcome to Ron. All the best with your treatments. The BCG gets a little more severe each time, so starting off easy is good!
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.
4 comments:
I, too, heard positive thoughts and images contribute to good outcomes - some add mentally creating images of 'beating' cancer cells. Maybe you can invent a treadmill that works like a video game where the longer the distance/harder the exertion, the more cancer cells on a screen shrink!
Hey Steve, glad to hear you are keeping up the healthy diet and doing the exercise in spite of how you hate it. I could take some lessons from you in that department! I hate gym type exercise but I love being outside, so I try to make my exercise fun and thus get it without trying (if you know what I mean!) For me, hiking is easy. It's doing sit-ups and push-ups that I find boring. I hate repetition, but that is what exercise is all about!
Hi Steve. I made a comment yesterday (1-24) but do not believe it was forwarded. I was diagnosed with bladder cancer in October 2008, had a TUR on 11-11. Have finished 3 BCS with little after effects (some blood on day one and two; urgency for a couple of days.) I am planning on a Dr. Lamm-type vitaman regimen soon.
I will continue to follow the blog -it has a lot of good, sound information. Thanks for starting it.
Ron
Thanks TK and Kathie, and welcome to Ron. All the best with your treatments. The BCG gets a little more severe each time, so starting off easy is good!
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