The nurse was new to us and ready to roll right away. She informed me that last week's sample was clear of active infection, which is good news. The Doc was in a cheerful mood after his vacation. He had taken the family white water rafting down the Grand Canyon - a full camping/rafting experience. He recommended it highly - if you can handle the camping. He said he kept his promise and didn't think about me once. That's a good vacation in my book! He also mentioned that the infection was gone, which is not mandatory, but he prefers things that way. There were both red and white blood cells in the sample, consistent with expectations. Instillation went smoothly, and I told him how well PA Liz had performed and that I wanted her to be my backup. He was glad she had done well, and told me they rotate the PAs between the office and surgery week by week, so it wasn't realistic to have one designated. But I could ask for her specifically during scheduling. I suggested maybe I should schedule the post-cytoscopy BCG now, and he didn't comment. Instillation (described on the Instillation Page - 2/10 on the gross-out scale) went without too much incident.
On the way out, the scheduler asked if we needed a reminder for next week - my last of this session! I asked about scheduling BCG post-cytoscopy, and she didn't want to do it. They want to know the results of the scoping before future scheduling. Oh, well. So much for my attempt at forward-looking optimism! Returned home and did the hydration thing. Keep in mind that I don't drink any fluids after going to bed, so it's been around 12 hours and the system needs a good kick-start. So I have increased from my original schedule. I now do 16 ounces the first hour, 16 ounces the next half hour, and then 32 ounces the next half hour. This has made getting the BCG out after 2 hours much easier, and hasn't created any "holding problems." Then I continue with 32 ounces or more per hour for the next six hours, then cut to half of that for the balance of the evening. This schedule keeps me going most of the night at least hourly, but the volume has purged the BCG, blood, and clots very well. Keep in mind that the instructions say no fluids for 4 hours before, so I could get up early and have something to drink before 6 or 6:30AM. I don't bother with it, and I think it makes the Doc's job easier (bladder is good and empty) and the BCG solution doesn't get diluted much during the 2 hour holding period.
This week the side effects were more than even Week 3, so the BCG is certainly doing something. And this week there is a new, minor side effect! We can now add some small, solid "bits" to the blood and clots. The "bits" are about half the size of small grain rice, or smaller. Some are rust colored, some white, and some translucent - nothing too gross. The period of side effects lasted a lot longer than Week 3 or Week 4, but no extra discomfort. Details can be found in a table at the bottom of the Instillation Page. I was very sore the week after BCG #3, but that may have been due to the ancillary infection. We'll see how it goes tonight, tomorrow, and the next few days...
Hi, I think your blog is terrific, and I would like to feature you on wellsphere . Would you drop me an email at Dr.Rutledge(at)wellsphere.com? Good health! Geoff -- Geoffrey W. Rutledge, MD, PhD Dr.Geoff's MedBlog
I too have bladder cancer. I have had 2 surgeries and six BCG treatments. The cancer has come back and I am scheduled for surgery again 8/19 and then 6 more treatments.
It's been a rough road but if you can deal with it with humor and love, it always makes it better.
We ride motorcycles a lot also. It's wonderful, isn't it?
I will be praying for you.
If you would like to email me, I am at robyn.malone@noaa.gov
Have a wonderful day and keep up the wonderful work !!! It is a blessing.
I felt like I entered the twilight zone when I read your blog. I'm a non-smoking white male diagnosed with high grade non-invasive bladder cancer at age 51 (quite certain I had it at 50, didn't recognize the symptoms - dang!!). Too young (statistically speaking), too healthy (I stay fit, right weight), and no historical health issues (no surgeries, etc). I also had doctors asking about health history and being surprised that I had no issues.
I too had TUR (resection cutting out the tumor), followed by a "restaging" (go in again, and take a biopsy to make sure the stage was assessed correctly) and I'm on BCG round 1, instillation 3. No side effects, really, at all.....so far. I read your full site with great interest as it provides the most insight into the diagnostic and BCG process that I've found anywhere. Add to that a little sarcasm and a healthy sprinkling of humor and it should be the "top 10" must read list for any bladder cancer patient. I also appreciate you're positive outlook (I know this is hard some days....). I found it particularly interesting that you and other bloggers aren't required to do 1/4 rotations lying down every 15 minutes to get "proper coverage" of the bladder. I'm in Canada, maybe the practice is a little different. This was also the required process post-TUR with Mitomicen instillation. I did find one fairly extensive study that linked bladder cancer to lack of hydration (double the rate of occurance in males drinking less that 8-12 glasses of water per day. I work outdoors in the summer and can lose 10 pounds in a day without hydration. It's the only thing that made any sense as a contributing factor. Regardless, it's treatment time now, and your blog is fabulous and very insightful for someone like me. THANKS A BUNCH for your posting!!! Mark
Hi Mark, and welcome to the "club." There are many docs that recommend flipping every 15 minutes for the 2 hours after BCG instill. Mine does not, but I pretty much do it anyway.
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.
8 comments:
Sounds good so far Steve!!!
Your rooting team!!!
J
Thanks Jim-Bob!
Another friend told me to GO FOR GREATNESS, which gives new meaning to continuous voiding...
just checking in, sounds like thinks are moving in a good direction. thinking the best for ya!
yikes, no spell checker! "things"
Hi, I think your blog is terrific, and I would like to feature you on
wellsphere .
Would you drop me an email at Dr.Rutledge(at)wellsphere.com?
Good health!
Geoff
--
Geoffrey W. Rutledge, MD, PhD
Dr.Geoff's MedBlog
Hi Steve,
This is a great blog. You are a talented writer.
I too have bladder cancer. I have had 2 surgeries and six BCG treatments. The cancer has come back and I am scheduled for surgery again 8/19 and then 6 more treatments.
It's been a rough road but if you can deal with it with humor and love, it always makes it better.
We ride motorcycles a lot also. It's wonderful, isn't it?
I will be praying for you.
If you would like to email me, I am at robyn.malone@noaa.gov
Have a wonderful day and keep up the wonderful work !!! It is a blessing.
Hi Steve
I felt like I entered the twilight zone when I read your blog. I'm a non-smoking white male diagnosed with high grade non-invasive bladder cancer at age 51 (quite certain I had it at 50, didn't recognize the symptoms - dang!!). Too young (statistically speaking), too healthy (I stay fit, right weight), and no historical health issues (no surgeries, etc). I also had doctors asking about health history and being surprised that I had no issues.
I too had TUR (resection cutting out the tumor), followed by a "restaging" (go in again, and take a biopsy to make sure the stage was assessed correctly) and I'm on BCG round 1, instillation 3. No side effects, really, at all.....so far. I read your full site with great interest as it provides the most insight into the diagnostic and BCG process that I've found anywhere. Add to that a little sarcasm and a healthy sprinkling of humor and it should be the "top 10" must read list for any bladder cancer patient. I also appreciate you're positive outlook (I know this is hard some days....).
I found it particularly interesting that you and other bloggers aren't required to do 1/4 rotations lying down every 15 minutes to get "proper coverage" of the bladder. I'm in Canada, maybe the practice is a little different. This was also the required process post-TUR with Mitomicen instillation.
I did find one fairly extensive study that linked bladder cancer to lack of hydration (double the rate of occurance in males drinking less that 8-12 glasses of water per day. I work outdoors in the summer and can lose 10 pounds in a day without hydration. It's the only thing that made any sense as a contributing factor. Regardless, it's treatment time now, and your blog is fabulous and very insightful for someone like me. THANKS A BUNCH for your posting!!!
Mark
Hi Mark, and welcome to the "club." There are many docs that recommend flipping every 15 minutes for the 2 hours after BCG instill. Mine does not, but I pretty much do it anyway.
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