Here we go again!

Here we go again!

Dr. Hurley had referred me to a urologist that specializes in bladder cancer.  I had an appointment today at St Elizabeth's in Brighton with Dr. Matthew Ingham.

My ride into Brighton on this first Monday after the time change was fairly uneventful (thankfully).  I gave myself an hour and a half for travel.  I arrived at the hospital parking garage about a half hour before my appointment.  My luck, the garage attendant was setting up 'garage full' sign right in front of my car as I waited to enter.  I asked where should I park.  He instructed me to go to valet parking.  I'm not a fan.  So suggested that I wait until someone left the garage.  He thought it was a good idea so he asked that I move off to the side.  Other people behind me weren't too happy and some heated exchanges took place, as if the attendant had anything to do with the garage being filled.  One guy, recklessly back his truck up almost hitting my car then left rubber as he exited. I had pulled over so  I had clear sight of the attendant and could make eye contact when a vehicle left.

Not too long after, a car was exiting.  I got the visual cue to proceed.  Not knowing how things worked and hopeful that no one else would beat me to the opportunity, I drove up to the gate and was hoping he would lift it.  He walked up to me and said I needed to take a ticket so I could pay upon exit.  I told him I'm not with it today, and he was very pleasant and said no worries.  He pressed the button and gave me the ticket.  I'm in!   I went slowly looking for that elusive spot which happened to be on the top level.  I still had time.

I figured out which building I needed visit.  The directory in the lobby had the doctor's name and which floor/room he was in.  I rode the elevator to the third floor and looked for 303.  I couldn't find it, so I walked around looking for 303.  There was was no order, but I did find the room.  I checked in and was given my obligatory SAT's to complete.  I just started when my name was called.  I was directed to an examination room where the medical professional took my vitals.  She was having trouble with the blood pressure cuff and tried a few times.  She said she would return with another.  [She never did].

I sat and continued to complete my paper work and a doctor (didn't get the name). [Masks make communication challenging].  He asked some questions about my medical history, as well as family members.  After harvesting the information, he said Dr. Ingham would be in to talk to me.

Not too long after, Dr Ingham arrived.  After my health history monologue, he added that he did see some imaging (and apparently Dr. Hurley captured some during my TURBT procedure).  He did say that he needed more data and images. Because of how and where the cancer is.  He said he needed more data to define the best course of action.  Like Dr Hurley, he sketched out my condition and described the three possible action plans, but he did not commit to any and won't until he has more data. He wrote in my care summary the following:  [my comments and understanding will be in brackets]

"I am going to refer this patient down to Saint Elizabeth's Hospital for urologic consult concerning this diverticular bladder cancer. [The 'pouch' that has grown out from the bladder is very similar to diverticulitis in that it's not a normal structure and many times things grow there.  In my case cancerous tumors.] The fact that he has high-grade cancer invading the lamina propria in a diverticulum is somewhat concerning. [ In the doctor's sketch he indicated that there are layers around the bladder wall, scaffolding; muscle and fat.  Without imaging he is not sure of which layers may be with the pouch.]There is no muscularis propria behind this so I am unsure of whether or not how invasive this is. [ There is concern that the cancer may have spread.] Whether or not he can get away with may be a repeat fulguration with BCG instillation versus a diverticulectomy versus a radical cystectomy is difficult to say at this point and I need confirmation from of other urologist expert in this disease." 

That last statement sums up the three possible plans of action.  The repeated fulguration with BCG, pertains to the scraping, cauterizing and 'chemo-like' medicine.  Diverticlectomy is the removal of that bulge.  Radical cystectomy is complete bladder removal. 

There was a discussion about life altering radical cystectomy and the need for an ostomy bag.  The most common (based on my age) is creating an outlet for urine that empties into a bag.  At a high level, a piece of the small intestine is fashioned as a new drain that attached to a urine bag.  I also discussed the possibility of a neo bladder.  Although being an option, it's generally used on young men.  But he did say it's not off the table.

Next Steps

He wants imaging done (CT scans of plevic area and the lungs).  I asked why the lungs?  He said that if the cancer spreads, it's most likely to go there.  [HOLY SHIT!]

I asked if these imagings can be done locally, to which he said, yes.  I was informed later that they will be done at Holy Family.  [Waiting to hear back.]  He said that if I do need an MRI, based on other images, that would need to be done at St. E's.

No new news, but a better understanding of what's going on.  

More to come!