RECURRENCE, It CAN Happen! - August 1, 2015

Update: Micro-pathology showed something less than full recurrence for Julie.  She and I concur that baking soda is working its miracles.  Here are the exact words of the path report.  You can judge for yourself.  Conservative diagnosis is that it's "indicative of recurrence."  My diagnosis is that it's indicative of the efficacy of baking soda regimen.

Sections show two fragments of urothlium with are extensively denuded and contain some cautery artifact.  There is a focal area containing somewhat thickened urothelium and a suggestion of a papillae. There is no significant atypia identified. This area is suggestive of a low-grade papillary urothelium carcinoma but the scant amount present precludes definitive diagnosis.

Recurrence - it's a scary deal.  In bladder cancer without treatment of any kind there is a 90+% chance of recurrence in 10 years.  With treatment, this number is cut to 50% or less, still very high.  I believe that baking soda, diet, exercise, and supplements can reduce this number even more.   In our non-statistically significant sample of folks who follow this blog and keep me posted with their progress, we have had only 1 case of recurrence reported, after a cysto with no mytomycin bake or BCG follow-up, within 6 months.  For the rest, we have had no recurrences.  Until now.  Julie T. in Illinois had some doubts about her physician and had an appointment with another for a "meet and greet."  The decision was made to do a cysto on the spot.  The doc felt he saw a very small tumor in a completely different area.  He speculated that it might be recurrence based on stirring up cancer "seed cells" from the previous TURBT and cysto poking around.  The prior TURBT did not have a chemo bake afterwards.  On July 15 a second TURBT was performed by the new doc with a mytomycin chemo bake following.  Pathology revealed a small superficial low grade papillary tumor recurrence.  That was the bad news.

Was there any good news?  Absolutely!  Let's start with this - follow up exams via cystoscopy do detect recurrence early.  And then there was the size and grade, both favorable.  On top of that was the opportunity to do the chemo bake afterwards, and to look forward to a great follow-up regimen with a new doctor.  Julie is holding up well, and has her game face on.  Nobody wants to go back to quarterly cystos, and it's a mere nuisance in the big scheme of things.  Easy for me to say, I suppose.  

Here is Julie's take:

Not the news I had hoped for, but I am very thankful it was found super early and the only further treatment is 3 month follow up at this point. It sucks going back to scopes every 90 days, but I guess this is the nature of the disease. I am planning on continuing the baking soda regimen as my new dr. feels this recurrence was caused from the previous dr. going in in and stirring up old cancer cells that had been lying dormant.  Even though the pathology report showed no cancer cells present, it is possible that a stray cell was activated and seeded itself in the new location.  I am frustrated a little because I asked the old dr. to use mitomycin after the surgery in and was told no.  It was used this time. I feel if I had been listened to, then this may not have happened.  I supposed this is just another reason why I needed to changed dr. 

What was most surprising and disturbing to me was that Julie was one of the first to adopt a baking soda regimen, taking a teaspoon nightly in 4-6 ounces of water.  This was enough to keep her urine pH between 5.5-6.5 during the day.  As you all know, I am a big proponent of this regimen.  The only thing I would suggest different for Julie would be to go to two doses per day, bedtime and early morning, with the goal to keep urine pH at 7.0 or higher for 24 hours.  I have had to adjust my personal amount to a great heaping teaspoon each morning with about 14 oz of water to make it palatable.  This keeps my urine pH at 7.5 or higher for 24 hours, even if I drink red wine in the evenings.  With the new doc, the new TURBT, the new chemo bake, and increased baking soda regimen, I think Julie will be in great shape for zero recurrence in the future.

For the rest of us this is NOT a bad news story.  This tells us that the ongoing surveillance is necessary and recurrence is not necessarily a big deal.  This disease can be managed by staying on top of it aggressively.  Hang in there, and keep the attitudes positive!

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