Bam................it hit me! After about 7 years of "of no evidence of Bladder Cancer" and all Tests for bladder cancer being negative ( Urine cytology, negative NMP's, CT scans, and negative cystoscopies)...BOOM...the floor seemed to drop out-- and all the fears, worry and dread of those first few weeks after being diagnosed came back.
I had gone to my Urologist's office for my regularly scheduled 6 month series of 3 (10% strength) BCG treatment regimens. This was to be my last 6 month series of treatments before switching to a yearly BCG regimen. (I am following Dr. Lamm's protocol-There is more info in my first year's posts). As always, I gave my urine sample to be tested before my BCG treatment. After my BCG treatment I waited as I always have for my NMP results. Always in the past nearly 7 years these NMP test results had come back Negative-and that's what I was expecting this time!!!
So while waiting in the duh ..."waiting room" the "nurse" came out and said "The NMP was positive"!!!!! ...Kapoww Kablam..!...I'd been "sucker punched"..the room started spinning, and all the old demons of fear and dread seem to rush back in with a vengeance! All I could think of was "it's back, it's back'----you knew it would come back you stupid ass, now that horrible time starts all over!!!! I had just been getting use to the idea that I may be truly "Cancer Free" and starting to live and feel like I did BC (Before Cancer). I felt like Michael Corleone saying in the Godfather "Just when I thought I was out... they pull me back in!"
After regaining a modicum of my senses back, I went into my "normal panic mode" and asked to have the Urologist do a double check with an immediate cystoscophy. But as my luck would have it, the urologist had a sudden death in the family and quickly left the office! AND they said it didn't matter as the BCG treatment would so distort the viewing of the bladder wall that he would not do it then anyways. A retest of my urine was also impossible because the original sample had been disposed of and my urine and bladder were now infused with BCG! Oh joy...
After the hour long restless trip home (laying down in the back seat and turning every 15 minutes) I was finally home. After laying on the floor at home and turning every 15 minutes until I couldn't hold it anymore (a little over two hours) I rushed (first to the clorox ready bathroom) and then to the computer to get some more info on the NMP22 tests. After hours of research I felt a little better in finding some facts out about the NMP22 test. I found there was at least a hope that I had a "false positive" in that NMP22 tests were much more likely to give a "false positive" than a false negative ....although it was only about a 10 to 25% hope -depending on the literature.
I decided to wait a few days and then to take a Urine sample to my urologists to ask for a urine cytology test as well as a FSH test. The Dr. was still away but the office staff said they would submit the sample for testing. I also decided to go through with my next two week apart scheduled BCG treatments.
Time passed very slowly and I was determined to have at least 10% hope but I didn't want to set myself up for another major shock and let down. I tried not to play the "woe is me" victim too much but it was so depressing.
One odd source of hope I had was that the "nurse" that performed and read my NMP test was also the person that does my BCG treatment. I say this as an odd source of hope because although kindly and sweet, the lady is quite elderly and I think her last nursing class (if any) was in the days before color TV! I always have to go through with her how to make a 10% BCG solution as well as which catheter to use and not to forget the lubricating gel etc, etc. I say all this is possible because over the course of my nearly 7 years of BCG infusions I have had all sorts of people administer the BCG, I've even occasionally had the office appointment scheduler assigned do it when the staff was out or busy!
Anyway, the hours seemed like days and the days seemed like weeks. I called and asked for the test results and found the Dr. had come back from the family wake and cancelled my urine tests- saying, "I'm the Doctor and I order the test not my patients.!" I spoke with him and after acting appropriately humble and doing the required groveling he ordered the tests and we scheduled a cystoscopy ! I groveled and did all the ass kissing because I wanted the test done and I didn't want to wait days or weeks to try to find a new urologists who would do the tests as well as let me follow Dr. Lamm's treatment plan ....even though they make a boatload of money following it as compared to more common regimens!!!
To make a long story a little shorter ....the test's finally came back (along with my CT scan) and they were all NEGATIVE!!! Plop plop fizz fizz ...oh what a relief it is!! Yet, I did not want to get my hopes up too high until all this info was confirmed the following week with my cystoscopy. The cysto examination seemed to turn minutes into hours when you are waiting for "your verdict" but the "jury" finally came in ---NOT GUILTY!! opps I mean no tumors or evidence of C! WOW...great news!
I later found out that "Nurse Hilda" had probably made an error in "test ecology and integrity" I was told . At that point I didn't care --I was just glad it was a mistake and I could try to go back to my happier and less fearful life of over a month ago!
That all being said...Just another word of hope for many on this site! It has been almost 7 years since being first diagnosed and (doubly confirmed!) no re-occurrence! I continue Dr. Lamm's protocol. (There is more info in my first year posts)!
Also, please learn from my mistakes and don't over react to one test, or one diagnosis without a second (or third) test or Dr.'s opinion!
So I will continue to repost these semi annual updates (opps now annual) to let you know there is real and certain hope...as I do so well remember the fear, dread, and anxiety way back then and my recent ahhh Deja Vue!,,, I didn’t think I would ever again spend a single hour without thinking about BC…now I spend days and even weeks…
I wish all well in their BC wars and hello to Patricia as well as all the others who were so terrific those first dreadful months...I and hope you are all doing as well as can be,,,you are terrific.
And once again thank you to all of you who helped during those first bleak months,,,,you are my hero's!
Best to all;
Your buddy in the BC wars….
Yosarian
Protons have mass? I didn't even know they were Catholic.
I'd kill for a Nobel Peace Prize.
-- Steven Wright
Don't sweat the petty things.
Don't pet the sweaty things.
Patient: Doctor, I think I swallowed a pillow.
Doctor: How do you feel?
Patient: A little down in the mouth.
Patient: Doctor, if I give up wine, women, and song, will I live longer?
Doctor: Not really. It will just seem longer.
As the doctor completed an examination of the patient, he said, "I can't find a cause for your complaint. Frankly, I think it's due to drinking."
"In that case," said the patient, "I'll come back when you're sober"
Time flies like an arrow; fruit flies like a banana.
Denial ain't just a river in Egypt. M, Twain
I was explaining to my wife last night that when you die you get
reincarnated but must come back as a different creature. She said
she would like to come back as a cow. I said, "You're obviously
not listening."
I used to have Mad Cow's disease, but I'm alright Nooooooooow.
-- Billy Connolly
Topic Author