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 knew all
but one of my grandparents. As far as chemicals, none. No real smoking
habit, except in college where I smoked occasionally. No immune deficiency. I lived in Miami Florida for most of my life, with 6 Years at Johns Hopkins University in Baltimore and another 2 years at Washington University in St. Louis. During college, I was working in the Radiation Oncology Department both at Johns Hopkins and at Mallinckrodt/Barnes Hospital, but was not aware of any over exposure to radiation (radiation tag never tested positive for overexposure). Though I did work with Cobalt 60 and Electron Accelerator Machines.
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 other amino
acids. No steroid use whatsoever. Water was always a big part of my diet,
but I only drank bottled water whenever possible.
My present job required/requires me to travel all over the world, with stops in Malaysia, Philippines, Indonesia, Hong Kong, Australia, New Zealand, and
also portions of Western Europe. So as far as diet goes, I am usually
restricted to whatever I can find in the country that I am in.
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
superficially at the fat layer. Margins came back negative, in addition no lymph node involvement. The Urethra, ureters, and prostate also were clean. Grade IV/IV.
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
after this is all said and done, how will it effect me? Again, all of the
answers were geared towards older people, and there was nothing, I mean nothing for younger patience. Now I am not by any means saying older people do not care about such issues, I am just saying I plan on being around
another 40-50 years and I am single, with no children .. what now ??? So
I thought, the American Cancer Society should be able to help me with information, so I registered at my local ACS office and also online, and guess what, they never responded. Not one phone call, not one pamphlet, no thing… Absolutely nothing from them except a donation envelope and a
solicitation call for donations. So yep, I am extremely frustrated. There
is not enough material for people my age. I found Dr’s had some information, but always provided the same answer, you need to have your Bladder and Prostate Removed and you will be impotent. To me that’s not good enough. Why do I need to have my prostate removed, if I do not have cancer in my prostate and they are removing my bladder? Why cant they just monitor the
prostate, and if cancer appears, remove the prostate at that time? Make
sense right? You bet it does, and now, of course after I have already had mine removed, some Dr’s are doing just that, leaving the prostate. Some other Dr’s have come up with a way of gutting the prostate but leaving the
capsule/nerve bundle intact, thus preserving sexual function. This provides minimal nerve damage exposure and preserves erectile function. Frustrated yep, but there seems like there is hope for others in the future.
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 motivated,
to keep myself upbeat, to find the reason to smile.
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, and
above all love yourself.
Roger Barton
Kissimmee, Florida