BCG sessions and other fun things to do in your spare time

Jim;
You ask how we cope with it all. Well i have had three major
cancers over the last twenty years and for me it's one day at a
time and doing whatever i have to do to survive. I think most
of us find that we are a lot tougher then we think we are.
First you do the things Pat and Sarah mention, decide your course
of action and proceed. There is none of this that is fun or
easy but whatever is ahead is doable. I can tell you one thing,
if you worry about this enough, it can grow in your mind till
it becomes insurmountable. That does no one any good. Do what
you need to do and than try to put it out of your mind. Over the
years i have became very good at busying my mind with other
thoughts. Jim; just so you know, i've had twenty years of this
and if you seen me today you would never know i had been through
what i have. When i started there was no one that hated going to the doctor more then myself, so if i can do this anyone can!
Wishing you all the best
Duke

Thanks Pat, I appreciate the information and the comments.

Jim

Strangely enough i have felt that i was one of the lucky ones..i didn't have much time to think about it..it was already invasive. Not having to go through 3 month check ups and BCG would have just prolonged my agony. I know that sounds strange.
But i had to move and move fast. Just like you ..huh? bladder cancer?...is there such a thing? I dutifully followed instructions and went to the local uro and had my TURB and my diagnosis within one week. The next few days i started researching for the best surgeon in the country..that is the SINGLE most important decision you can make...where to go and who does it. I was in for a second opinion at Memorial Sloan in one week with the grand poobah of bladder cancer Dr. Harry Herr. He took one look at my path slides and said "Re-Turb"..which he did 3 days later after other testing took place. He's a master of the scalpel..he got all of the remaining CIS and the margins the local uro missed. Very disturbing paper just came out saying that in 50% of the cases pathology is wrong by the local uro.
At any rate i then researched diversions as i still needed a cystectomy...it does have a tendency to come back but i had some time to do that and to pick the surgeon who was world class in female surgery. Big difference that you don't have to worry about.
The best thing you can do for yourself is first make sure the pathology is correct by either seeking a second opinion or sending the slides to a top rated cancer or urological center...MSK, Johns Hopkins, Cleveland Clinic, USC/Norris.
Its pretty common place and recommended by the top Cancer centers to have a Re-Turb within 6 weeks and no longer than 3 months just to make sure those margins are clean. There's where your second opinion at a top center comes in..you won't regret it.
If BCG is recommended give it a shot...but if it comes back more than once...don't try to save that bladder because CIS can be very aggressive and you really don't want it to find another hiding place in your body.
Take it one prudent step at a time and make sure you're with the best. If you need some help finding that center or Uro thats something i can help you with..just let me know where you are.
pat
Ok should have figured it out..Oklahoma.....oh geez..there are no NCI designated centers in OK...not sure where you are situated?..closest NCI center maybe St. Louis where Dr. Adam Kibel a top uro is situated at the Barnes Jewish Hospital..
www.siteman.wustl.edu/DoctorProfile.aspx?memid=932&Type=Patient
Next thought would be MD Anderson in Houston..look up Dinney, Kamat or Grossman..all tops

www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/care-centers/genitourinary/doctors-staff/index.html
pat

Sarah,

It appears that you and I have some what of a similar diagnoses. As I indicated, I am really new to all of this, the terminology, the procedures - everything.

I can't even describe how I felt when my Urologist told me that I had cancer - bladder cancer. I have always been a fairly strong person and not quick to panic or even to show panic. I consider myself one that reacts to a crisis in a calm and organized fashion. I attribute this self control to 19 years in high rise construction work and a stint in the Air Force as an aeromedical evacuation tech (medic in an airplane in plain english)in my younger years and my twenty years of courtroom surprises.

When my doctor said those words to me, I could sense that my face flushed, but I kept my voice calm and asked her "is it going to kill me?" She paused for a moment and said "not if I can help it." We continued the conversation and I could not tell you a single thing that she said. On the inside, I was screaming at the top of my lungs and had to physically resist the urge to get up and run - to where, I don't know - just run.

The part that upset me the most was the CIS. It still freaks me out. My doctor did a CT with and without contrast dye from my feet to my head. She said that the cancer had not spread from the bladder.

I have always acknowledged that I am not going to leave this world alive, but I can't shake the feeling that now I know the cause of my death. And because of the agressiveness of CIS and the way that it can make itself nearly undetectable, I worry that even with monitoring, it will escape and set up shop somewhere else in my body and not be detected or not detected in time.

I have to keep smiling and making jokes around my family and friends, but I am really scared as hell of what it going on with my body.

How do you cope with all of this?

The Uro

Wow! I hadn't even thought about that...I quit cold turkey. Maybe the endorphins released from the smoking are rebelling? That makes more sense than anything else. Thanks Pat - now I have to start that exercise program my wife has been "gently urging" me to start and maybe a little chocolate won't hurt either.

Jim