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I was 35 was I was diagnosed with Invasive Bladder Cancer.
There is no cancer history in my immediate family or even in the second
and third generation family members. My parents are still alive, and I
Diet Soda's and coffee with nutrasweet were a stable in my life. But
I also was very heavily involved in body building and was supplementing
my diet with creatine, whey powder, Glutamine, and vitamins, and some
My present job required/requires me to travel all over the world, with
stops in Malaysia, Philippines, Indonesia, Hong Kong, Australia, New Zealand,
Exact Diagnosis before Surgery was Invasive Bladder Cancer TCC Grade III/III (no staging done) though they found evidence of the cancer invading the muscle.
Exact Diagnosis after RC: Stage 2B/3A. Cancer was into the muscle and
I experienced almost a 5 month delay in diagnosis. The first Urologist that I saw, was sure it was a kidney stone. I was sure that it wasn't. However, Cytology kept coming back negative (I had 6 of them ) for cancer. I even had Spiral CT on my Kidneys and had they looked just a little lower they would have found a nice size mass in my bladder. As Maxwell Smart would say "MISSED IT BY THAT MUCH" . After this Dr failed to listen to my repeated concerns, I went to another Dr. who stated that all of the blood and clots led him to believe there was something else going on in my urinary tract other than stones. He thought it was broken blood vessel, so scheduled a Cystoscopy. Only upon having that done, did I know for sure I had cancer. He said, he would have never guessed I had cancer to look at me, as I was in great shape and had no risk factors. Maybe had they caught it early enough, I would still have my bladder, but cant dwell on that.
Another frustration I had was finding information for someone my age
about quality of life issues, variations on treatments, etc. A guy my
age has completely different quality of life concerns than those who are
in their late 60's to 70's (generally speaking) and to this date, there
is very little information found on the internet. I had to speak with
many Dr's, many patients and of course experience the situation for myself.
I had so many questions. Yes I knew my bladder had to be taken out, but
was there a way to preserve it, what are the different types of urinary
diversions and what are their success rates long term? No one really knows
for sure, if my new bladder will hold out 40 years from now, and how will
I get along with it at that time. Then of course there was all of the
sexual questions, will I get an erection, how will sex be, what happens
to me now, I am single and have no children? What kinda woman will have
me if I cant perform or have kids? Do I really need to have my prostate
removed, is there a way to preserve functionality while removing it, is
there a way to harvest sperm
The key to dealing with this disease, is your approach. My approach was
simply that I was the only one that could get myself cured. It was my
responsibility to become informed, to assemble the best team of people
to help me achieve the goal of being cured and to ensure that everyone
kept focused on that goal. Most people think its the Dr's responsibility
to cure you, well that is definitely not so. As a patient it is your responsibility
to find the best, to obtain the best care that you can possibly obtain.
You run the show, you assemble the best team possible, and you will get
the best outcome possible. Attitude is everything, you need to stay positive,
to prepare yourself mentally for anything that maybe thrown at you. You
can't change the fact that you have cancer, but you are in control of
how you handle having cancer. I knew that if my time on this earth was
going to be short, it was going to be spent in good spirits, and believe
me I still think that way today. It was my responsibility to keep myself
I took a different path than many people when it came to my surgery. I chose minimal invasive surgery, first of all because I am a chicken, secondly because I am vain, and thirdly because it did not make sense to me why the couldn't do it laprascopically. I did not want to be cut open like fish, and minimal invasive surgery allowed for only five tiny scars (1/2"). It also minimized blood loss, infection, and decreased the healing time. However, while I took a new approach to the Radical Cystectomy, I did not jeopardize finding a skilled Urologist and medical facility to conduct this surgery. This point cannot be stressed enough, Find yourself the best Dr (urological surgeon) and the best hospital. Do not just look for the best in your town, or the best in the state, look for the best in the country. While yes, having the surgery out of town can be difficult, most good hospitals can assist you in finding cost effective accommodations. The surgeon performs the operation, while your Urologist at home will manage your care post-surgery (this is quite common, and is completely acceptable and preferred by most Urologists).
Another item that I feel is important and is worth repeating is that
you are in charge of your care, not your Doctor. You must, research this
disease, assemble your team, your Oncologist, your Urologist, your Surgeon,
your Medici al Facility, your after surgical care, your caregiver). After
the surgery, you must get yourself out of bed, exercise, take care of
your new bladder, take care of your body, and learn to be continent .
Getting well takes a lot of work and doesn't happen on its own. It is
your responsibility to get the best care possible and only your responsibility.
I am not saying you cannot take time out to feel sorry for yourself, I
am simply saying do not get stuck in that mode for very long. Feeling
sorry for yourself , depression, or even anger , will only cause helplessness.
As you can see you have lots of work to do, and plenty of things to keep
your mind occupied. Once you feel better and are getting back to normal,
do not forget that you are alive. Every morning that you wake up is another
day that deserves to be lived to it's fullest. Hug your kids, your wife,