First Visit to UAB Doctors to Plan Treatment

I went to my first visit at UAB last Thursday, 6/11/15.  Drove up Wednesday and stayed the night at the Courtyard attached to the hospital since we had an appointment an early appointment.  I met with my urologist/oncologist, Dr. Sunil Sudarshan at 8am.  He had already had my specimen looked at by his lab, and sure enough, High Grade, Aggressive TCC of the bladder.  No surprise there.  He mentioned that is was "through" the muscle, kind of as an aside.  I immediately stopped the conversation.  "Is it 'through' the muscle or 'in' the muscle.  Those are two very different animals with very different life expectancy.  In the muscle, but confined to the bladder, I have about a 65-75% chance to live 5 years.  (Believe me, I've researched the hell out of this) and through the muscle and out the bladder drops it to about 30%.  If you recognized I gave myself about a 98% chance to live 5 years 3 weeks ago, now its dropped to 65-70, I am fighting for every percentage point.  Dr. Sudarshan immediately understood my question and said, "No, no.  I mean we know its in the muscle.  How far we cannot say, there is no evidence it left the bladder."  [Not really buying that either but I'll explain that in a bit].   Basically, and I knew this up front, my treatment will be 4 rounds of 3 weeks of chemo, followed by a Radical Cystectomy (RC).  More on that when I wrap my head around that.

I went the Kirkland Clinic at UAB because everything I've read says RUN to a National Cancer Institute designated hospital.  And UAB is one.  There was however, another doctor I preferred when I researched the available doctors at this clinic.  I'm already a bad patient, but remember from the first blog I said I wasn't allowing anyone else to decide for me after the first doctor.  Okay, so here's the deal.  This doctor has credentials to die for.  He graduated from Duke University Medical School,  He did is residency at USC Medical School, and then did a fellowship at the National Cancer Institute specializing, and studying, Urology Cancers.  But then my sister pointed out; all his research papers focus on kidney cancers; not bladder.  hmmmmmmmmm.  I have to approach this delicately."

"Umm, Doc.  I'm here because of your credentials and those of your partners.  They are impeccable specifically for my kind of cancers.  I don't want to infer anything or insult you in any way, and if I do, just shut me up.  But I noticed that most of your research has been with Kidney cancers.  However, how familiar are you with performing an RC procedure?"  He replied that he does a few a month, more one month than another.  Comes in spurts.  And he's about to start using the robot for minimally invasive (GOOD, that was my next question, do they have that). I asked him about nerve sparing and he said its about 50/50.  NOT what I wanted to hear.  He mentioned that his partner, does quite a few.  [I already researched his partner, definitely was my FIRST choice because he also was a fellow at the NCI and his focus was on Bladder Cancer.  The wait was too long for him]  Dr. Sudarshan said if I was more comfortable that I could have Dr. Nix  perform the RC.  Then he paused, and said, "Everything you are asking is EXACTLY what I would be asking.  Let's just make Dr. Nix performing the surgery the default option.  I have absolutely no problem with that"  I now love this doctor.  He is going to have his radiologist re-examine my CT as well.  I mentioned that I no longer wish to see the urologist here.  Keep my family practice doctor in Daphne in the loop, but I'm not going back to the urologist that got my original biopsy wrong.  He said fine.   I had mentioned to Dr. Sudarshan my spine would get sore after a while, most likely age, and he agreed.  He requested a bone scan to be sure though, and that's really what I wanted - did research.

We were now done and I was off to the next doctor.  He pretty much was cutting me loose till after chemo.  Okay, that's the plan.

Next I went to see my new hematologist/oncologist.  His name is Dr. Guru Sonpavde.  His credentials didn't stand out to me, but what do I know.  He went to medical school in India and his residency and the rest in the US.  He is board certified in oncology, hematology, and internal medicine.  He was very matter of fact.  I liked that.  In fact, he noticed the "low density"  nodule in my right lobe mentioned in the CT scan (most people have these, likely nothing) and something about  two Lymph Nodes in the back of my abdomen.  Again, probably nothing the other doctors said.  He wanted to be sure.  He cancelled my bone scan and order a PET scan.  My heart leapt.  I really wanted that.  This scan just looks for abnormal cell activity.  Everywhere. 

After 8 months of bleeding, a bad biopsy, going back to the doctor for the same thing 3 times subsequent before a rebiopsy was performed to find the cancer was now 3.5 X 3 CM in my bladder neck, I simply find it hard to believe my cancer is still confined to my bladder.  If it is, I have a good chance, but fact is, with cancer, time is not on your side.  I feel like the window of opportunity was missed.  Just a feeling though, the PET scan will tell the tale.

Dr. Sonpavde new about all the studies.  In fact, he's leading one.  We talked about GC and MVAC.  I said I just wanted GC.  The outcome seems to be the same on both arms of that trial, but GC, while toxic, less than MVAC.  Dying from Chemo in GC is abou 3%, from MVAC about 5% with the same outcome.  Again, I gotta play the odds.   I mentioned that I might want to have my chemo infusion done in Daphne under his direction.  He was very hesitant about this.  Of course, it was my call.  He said in that case he would be the consulting doctor, and the guy in Daphne, down from the Home Depot would be the primary oncologist.  He would confer with the doctor but they don't always do what he tells them.

"WHOA!"  I actually said whoa.  The reality hit me.  I don't have a doctor.  I LOVE this doctor.  He knows his stuff.  Dr. Sudarshan cut me loose until after Chemo.  I basically fired my hometown Urologist.  I came to UAB for UAB doctors. I'm sure the guy in Daphne is fine, but my sister did hours of research to find the best facility with the best doctors. 

"WHOA! I need you to know YOU are my doctor.  No one in Daphne, not the urologist in Daphne.  I will do exactly what you tell me to do.  We will decide together my treatment.  I need someone who specifically gives a damn about me personally.  I want that to be you.  Do you want that to be you?  If so, everything we do is with that in mind.  If the guy in Daphne will do what you say verbatim, okay, if not, I'm driving here."

He got that.  It clicked.  This is when he ordered my PET scan.  He also said for me to talk to the doctor here in Daphne, and if I'm comfortable he will follow direction, okay, if not, drive here.  I never talked to the doctor in Daphne, I plan on driving to Birmingham weekly for the next 3 months.  PLUS, I need them to see me.  I need them to think of me when ideas come up or opportunities arise.  I got a doctor, and for the next 3 months, his name is Guru.  And I'm very comfortable with that.

Well, that's it until Wednesday, June 17 I go in for my PET scan and that afternoon I get my "Port" put in my chest.  This is what they'll run the chemo through.  Shouldn't hurt and I'll have anesthesia to put it in.  Thursday I meet with Dr. Sonpavde at 8am to go over the results of the PET scan from the day before and start the first 6 hour chemo infusion at 10am.  Regardless of what the PET scan shows. the  treatment is the same.  Its just if its confined to the bladder we are trying for a cure, otherwise, we are fighting for time.

Well, that's all I know right now.  I am attaching a picture of Dr. Sonpavde, right now, this is the guy that directs my care.