Amazing BCG Story - June 4, 2011

Many of our regular "frat members" provide me updates from time to time that their cysto or CT scan was clear, and BCG is done, etc. But our latest frat member, Ben F from Louisiana, things have been interesting to say the least! Like many of you readers he did as much research as he could tolerate after he was first diagnosed, and even found my humble little blog here. He sent me a couple of notes thanking me for the tips and advice, and had a couple of questions that I answered as best I could. One thing he had done was to choose a skilled and experienced urologist in New Orleans, even though it was a long drive from his home. He went through two TURBT procedures and his diagnosis was confirmed as T1, high grade. Like me, he wants to keep his BCG dosage as high as possible for as long as he can tolerate it. So far, so normal and routine. But since his doctor was a 2.5 hour drive from home, he decided to find another urologist at the Ochsner Clinic in nearby Baton Rouge, Louisiana, only 30 minutes from his home. For those unfamiliar with Louisiana geography, New Orleans is near the mouth of the Mississippi River where it empties into the Gulf of Mexico. Baton Rouge, the state capitol, is about 100 miles upriver to the Northwest. Because of the omnipresence of water and swamps in the area, few roads go very far in straight lines, making circuitous routing a necessity. Bottom line was the closer location to home made a lot of logistical sense. Since BCG isn't new therapy or particularly difficult to administer, Ben made the move and scheduled his first BCG (of 6) to begin on April 12 of this year.

But when Ben showed up for the BCG, the obligatory urine sample revealed the presence of an infection, or so he was told. So he went back home with a week's worth of Cipro. Mentally this was a huge letdown, as Ben had prepared himself well by reading about my experiences and even doing similar overkill to set things up. So Ben amused himself in the week of delay by researching Cipro, only to find that it was not recommended and would probably interfere with BCG. He made a few calls to the new doctor's office to ask about it, only to be told they would do some research. No feedback at all. Finally the day before the next treatment he was able to insist on getting an answer, which unsurprisingly was that he was correct about the Cipro. The BCG would be delayed by ANOTHER week! To add to the insult, they also reported that his infection culture did not show any growth, meaning that he actually did NOT have an infection in the first place! I have commented in the past that doctors in the US are generally competent and professional, but their staff people are almost universally incompetent. Many have provided affirmation, but this story from Ben is over the top!

Ultimately Ben was able to have his first BCG in Baton Rouge on April 26, and it went routinely. For most of us (except HK in Toronto), the very first BCG is a non-event, and so is the second one. From #3 and forwards things start to get interesting. Ben reports that he had no side effects, and that my relaxation techniques were effective. He also had some stern words with the doctor and staff, telling them he would overlook the poor start, but he expected better care in the future. And that he would be watching and participating. All were in agreement. When he returned a week later, they again reported an "infection" as indicated by leukocytes in the urine sample. While presence of leukocytes indicates abnormality in the sample, it is perfectly normal for post TURBT and post-BCG samples. But the doctor misinterpreted it as infection and Ben was sent home. He visited twice a week for two weeks to get his second BCG, only to be sent home each time. Ben called his urologist in New Orleans and complained. On his next visit, the incompetent urologist in Baton Rouge told him, "I don't know what to do. You should go to New Orleans where they do know how to proceed."

Ben made the two and a half hour drive to New Orleans to get his second BCG instillation from his original doctor on May 13, over two weeks after the first. The good news is that it was also uneventful. The bad news is that the doctor decided not to count the first one in Baton Rouge, so he has to do 5 more. And now for the truly weird part. I asked Ben, "Since you have a 2.5 hour drive home, and you must begin biohazard handling after 2 hours, do you spend the night in New Orleans?" Absolutely not. Ben is truly the Mobile Biohazard Man. After two hours he and his wife pull over to the roadside and conduct Biohazard operations. Ben describes it in his own words:

"We have my SUV rigged like an ambulance...pretty funny to see. We get one of those urinals and big red biohazard bag from doctor's office, bottle of bleach, wipes, gloves, etc. Then when time comes, we just pull over. I will probably get arrested before its all over. Only thing that we need is one of those flashing yellow lights for roof mount."

Priceless. I told Ben that if he would send a picture, I would blog about it. And so here we have it. Ben F. from Louisiana and his mobile Biohazard Station!


Deb said...

I know the condition isn't funny, nor are the treatments, but this story is truly funny to a point! Better luck Ben - I know all about those uncompetent urologists! My husbands just got his license suspended for REusing "ONE TIME ONLY" medical supplies - real reassuring! Luckily his partner (who is his partner no longer) was our doctor! - and he is clean as a whistle!!! Good luck Ben - all the best to you too!!!!

A Dived Ref said...

Good on you Ben - Necessity is the mother of invention. Those of us who have been through BCG can only admire your tenacity. Hang on in there :-)

Blood in the urine said...

Hang in there Ben! I'm sure that you would be able to fight through your Bladder Cancer and become even more successful in all your endeavors.

elcaligrafo said...

Hola !

Excelentes consejos y recopilación de material !

En lo personal, me ha ayudado a lidiar con los tratamientos de BCG hasta ahora.

Un guerrero más, desde Argentina.


elcaligrafo said...

Ayer tuve BCG !
Fueron muy útiles los consejos sobre hidratación, la descripción de fases, las medidas para mitigar los efectos adversos...
Suerte y adelante.
Desde Argentina, El Calígrafo.

elcaligrafo said...

Ben: creo que estás más loco que yo. Tiene razón Steve: conviene hospedarte en la ciudad en la que realizas los tratamientos.
En fin, tendrás tus razones para no hacerlo.
En mi caso, estoy a 5 cuadras del Hospital. Voy y vengo caminando.
El problema es la fase 2 (luego de las dos horas iniciales). Ahí si ¡TODOS FUERA DE MI CAMINO AL BAÑO!

Steve Kelley said...

We have three comments in Spanish from OLDMAN The Calligrapher in Argentina. Here is a translation for English speakers...


Excellent advice and collection of material! It personally helped me deal with the BCG treatments so far.

Yesterday I had BCG! They were very helpful tips on hydration, the description of stages, measures to mitigate the adverse effects ...Good luck and go.

Ben: I think you're crazier than me. Steve is right: it should stay in the city where you do the treatments. But in the final sense, you have your reasons not to. In my case, I am 5 blocks from the Hospital. I come and go walking.

The problem is phase 2 (after the initial two hours). That if ALL OUT OF MY WAY TO THE BATHROOM!
A warrior from Argentina, the Calligrapher OLDMAN.