– presented with carcinoma sarcoma rare form of bladder cancer which later became CIS and was successfully treated with BCG immunotherapy.
April 1996 – I was 46 years old when I began experiencing hematuria (blood in urine). At first it was painless, and periodic. After a few weeks I would urinate chunks of what looked like flesh. These were the size of a green pea or a bit larger. This was frightening. Through a combination of my own lack of organization and adminstrative incompetence in my GP’s office, it took me until mid June 1996 to get to a urologist. This was 10 weeks after my initial symptoms.
June 1996 – John Greisman, Urologist performed a cystoscopy and saw one tumor in my bladder. He scheduled a TUR (trans-uretheral resection) to remove the tumor and biopsy it. In a TUR, the surgeon sticks a tube through you penis into your bladder. He then puts a surgical instrument inside the tube to cut out or burn out the tumor. He usually saves the pieces to send to a pathologist for analysis.
As Dr. Greisman had told me that a bladder Tumor was considered cancer, I consulted with an Oncologist. The oncologist told me to get the TUR and that she would like a copy of the pathologists report on the tumor.
The pathologist’s report came back that the tumor was low-grade, grade 1, which means non-malignant. The oncologist promptly asked for the tumor to be re-analyzed by a different pathogist. The second pathologist said the tumor was a carcinoma sarcoma, grade 3 of 3. This meant:
1. carcinoma sarcoma is an extremely rare tumor, less than ½ of 1 percent of bladder tumors.
2. it’s a very malignant tumor, 90% of the people who get it die within 5
The pathologists report also said that he was unable to establish the
margins on the specimen. This means the urologist didn’t cut in deep enough around the tumor for the pathologist to determine that it hadn’t gotten into the bladder muscle. The first pathologist subsequently got fired.
My oncologist made me an appointment with another urologist. This urologistsaid my bladder should be removed.
At this point, my first urologist, Dr. Greisman, begins behaving in a very undoctorly fashion, calling me up at 7 at night to ask me what I’m going to do, and expressing frustration that I hadn’t come back to him, and, in general, acting like he cared about his patients. He was very concerned thatI not rush into an operation which was "life changing" in his words.
So, I had 1 urologist who wanted me to keep my bladder, and an oncologist and a urologist who wanted me to lose my bladder. Some research was in order.
First we sent the tumor to a third pathologist. He confirmed the second, more serious diagnosis. Then I went to a cancer researcher at USC Norris for a second opinion. He agreed that the bladder had to go. Finally, I got my specimen tested for the P53 gene.
At last some good news. The P53 test is a genetic test to see if the
cancerous sells have deactivated a particular gene. When this gene is
damaged, the cancer tends to be more aggressive. My P53 gene was fine.
At this point, against the advice of 1 urologist, 1 oncologist, and the big
shot urologist at USC Norris, I decided to try to keep my bladder. These were my reasons:
Dr. Greiseman was staking a lot on his advice to keep the bladder. If I kept it and later got cancer, I could sue him for malpractice, "dying cancer patient, etc. etc.". He would not be telling me to keep my bladder if he thought I would die.
Two years before I had the tumor removed, I began to experience "urgency" once or twice a week. Urgency is when you feel you have to continually urinate. I would feel this way, go to the bathroom, and very little urine would come out. I told my GP about this, and his answer basically was, "big deal. Another middle aged guy with bladder problems." I agreed with him and forgot about it. After my TUR, I noticed that I never experienced urgency any more. So I figured that the urgency had something to do with the tumor. Well, if that was the case, I’d had the tumor growing at least as long as the urgency, which meant it had been growing for two years before I noticed it. So I decided that, even if I grew more tumors, the chances are they’d
grow rather slowly.
The P53 test results were negative for over-expression. This is a little ironic, because more current research shows that it is not as good predictor as originally thought. My odds were better than most people who have this disease because I am not a 70 year old smoker in bad physical shape.
So we elected to try BCG. I researched this, found Dr. Lamm’s paper
published elsewhere on the web and we decided to use Dr. Lamm’s protocol.
There was quite a bit of mental relief after starting treatment – at last I
was doing something to fight the disease. I also started on the oncovite vitamin regimen recommended by Dr. Lamm.
I should talk about BCG side effects here. The first BCG treatment I had, I woke up at 3:00 am that night, had to pee. My pee looked like all blood. After that I noticed by bladder capacity would go down. I couldn’t quite make it through the night without getting up to urinate. This would get a little worse as the treatments continued, and go away about a week after the last treatment. That’s the extent of my side effects. I am very thankful.
October 1996 – its been 3 months and we do another TUR. This shows focal CIS. CIS is a serious cancer but focal is the better kind to have, as opposed to diffuse. The original tumor site shows no evidence of tumors. Since Lamm says the BCG needs 6 months to work, we decide to give it a chance.
December 1996 – cystoscopy shows a healthy bladder. Cytology (pathologist looking at urine for cancer cells) shows positive for transitional cell carcinoma.
June 1997 – cystoscopy shows tumor in bladder on a new site. We do a TUR. Being an old hand at this now, I decline the general anesthetic and go for a local. Highly recommend this. Went in at 8:00 a.m. out at 11:00 a.m. went out for breakfast. I had one small tumor removed which was positive for CIS. Cytology normal.
Since June of 1997, I have had no more tumors. My cytologies used to show atypical cells, but they have been normal for the last year.
I had an exciting episode in January of 2002 when I had my PSA tested. It was high – about 7.0. I read that bladder cancer can spread to the prostate so I was very worried. I quickly scheduled a prostate biopsy which is a somewhat uncomfortable procedure which yielded a negative result. Subsequently I found out that BCG will kick up your PSA scores. Two months later, between BCG treatments, I got my PSA tested again. It was below 1.0. I am thankful every day for my life and for Dr. John Greiseman.