Shell Shocked

I presented with blood in my urine the night before I was to board a cruise in San Juan, Porto Rico. It was December 27, 1999. I immediately new what it was----CANCER. My wife and I got up the next morning and caught a plane back to Dallas. My wfe, at the time was a working RN at a Baylor Hospital Short Term Stay surgery center. She called a urologist she new while we were on the plane and explained my problem. She then called the surgery center and reserved the operating room for the next morning. Upon my arrival in Dallas, I went directly to the doctor's office where I was x-rayed and received a cystocopy (sp?). Yep, he thought it was cancer.
The next morning, the cancer was confirmed and it was removed.

The doctor who removed the cancer did not believe in BCG. Therefore, on the recomendation of a doctor that my wife worked with, I went to see the doctor that was the head of bladder cancer research at Southwest Medical School in Dallas. He advised me to do the BCG treatment. I had a very virile cancer that had not invaded muscle as yet.

I have fpllowed Dr. Lamm's protocol to the letter. I'm now 7 and 1/2 years out and, knock on wood, no recurrance.

I learned these facts:
1) Learn everything you can about this disease and its treatments
2) Do not blindly follow doctors when you read information that is
contrary to what they are telling you
3) Do not wait! Cancer does not get better with time. Get treatment
or surgery immediately. If you wait, it will be worse, and it might
kill you.
I wish you the best with your recovery. Be sure to consider having the BCG treatments. They hurt like hell, but they are better than the alternative. I now take three of them a year.

P. W. Reddy

Rosie,
You certainly have been thru so much - I am happy the results were so much better than at first expected. Like you, when I first heard "cancer" I thought my life was over, because I did not know anything about bladder cancer. I get so nervous (like everyone else) before my scopes, but so relieved when they are clear. This last time with the biopsie then the FISH test it seemed forever. This is such a great resoruse - thank you to all, my first day posting and I feel at home!

Teardrop,
So true that the diagnosis of bladder cancer is a "shell shock" and trauma and particularly true for someone who has been healthy and active all their life, ate all the right things and felt no pain or sickness when blood appeared in their urine. I remember so well, being at the urologists office the third time and finally a cystoscopy being done when he said " I see where the blood is coming from, you have a tumor there." He said, get dressed and we will discuss it. I got dressed, met him at his office desk and he said "well you have a tumor." I said "a tumor, well that doesn't necessarily mean it is cancer does it?' He said "oh, it is cancer alright and as long as you have been seeing blood in your urine (4 years on and off) it is probably throughout your entire urological system." He then motioned from an area just below my chest (where the kidneys are situated in the back) all the way down to past my belly button (where the ureters, urethera and bladder are located). I did not say anything more. I was just in complete shock. He set up surgery for a few weeks. I drove toward my home in a daze. I saw my husband driving to work. I honked my horn and got his attention. He turned around and met me in front of our house. He asked what was wrong. I said " the doctor says I have cancer and it is probably spread throughout my system." I cried and he held me. As it turned out, the tumor had not spread throughout my system and even though it had been growing in there for some time it was not of the aggressive invasive type. It did take me 2 to 3 years of research and questions, visits to 3 other urologists and cancelling the surgery set with the first urologist to learn the truth of my low grade superficial non threatening condition but first had to go through a couple of urologists stating they might have to take out my bladder.

Rosie Ambs

Dear Teardrop,
From the minute you hear the word cancer your life is changed forever. It's like a time-bomb waiting to go off again at any minute. Of course it's normal to be worried. It changed me emotionally. But then as the years pass, and you continue to live your life, it consumes you less and less. Not everyone has a bad outcome. I was TaG3 plus CIS and have never had a recurrence in 6½ years

Dear Tear,

Hi. I am glad that you posted. Alice has done a very nice job of covering all the bases.

I have moved your post and the subsequent replies in order to form an individual thread. I did this in the hopes that it will bring more attention to your particular concern.

We have all been shell shocked by our diagnoses, I think. It does get easier with time and with each follow up. I was diagnosed in January 2006 with a higher grade than yours and I have had BCG treatment and no recurrance as of yet. Too, it has been really nice for me to be able to come to this forum and realize that I am not alone in my fears and roller coaster rides of emotion.

Take care and I am glad that you are here.

Regards,
Rosemary

Thank you, Alice - I am so happy I found this website. My BC was so fast - one day I awakend and had blood in my urine - a lot - went to emergency room (it was a Sat) They did a sonigram and sent me home with an appointment with a uroligist on Mon. After confirming everything - surgery on Tues. I know I am blessed with the type I have - or had - but sometimes I am so emotional! I am 63 yrs young - so I have known a lot of people family and friends - who have died from cancer. You are so right about staying up with everything - I did a lot of research before my doctors appointment and flew to St Louis after the BCG for a second opinion. BC did start a journey looking into my life and my strong family.
thanks again, Alice - you have really helped!