The protocol that Mike Mann talks about in this page was developed by the Radiation Therapy Oncology Group (RTOG).
Bladder – sparing protocol: Combined Modality Treatment of TUR + Chemo-radiotherapy
Update– Jan 2002
My name is Mike Mann; I am 61 years old, smoked two packs/day of unfiltered Camels for over 40 years and was recently diagnosed with bladder cancer. The State of Florida employs me as a computer systems analyst, network administrator and webmaster. I have been doing computer systems analysis work since the sixty’s and it tends to make one somewhat cynical and to seek solutions that are not necessarily common. The state employee benefit plan offers the option of the common insurance coverage or an HMO. I had chosen the HMO when employed by the state and have been quite satisfied both with their services and with my primary care physician.
The April 3, 1999, weekend I noticed that I had a slight amount of blood in my urine. This increased somewhat over the weekend. Monday morning I called my HMO to find my primary physician out and was referred to the critical care unit. They examined me and took some samples for testing, diagnosed a probable bladder or kidney infection and gave me a prescription for some antibiotics.
Over the next few days the amount of visible blood in the urine gradually increased then what appeared to be clots were passed, and it decreased to nothing for a day or two then began again as before. Over the next few weeks this appeared to be a cycle over about five days. Gradually increasing, passing clots, decreasing to nothing and then starting over again, there was no pain involved. On Friday the critical care unit called to let me know that the test had been negative; there was no infection.
Monday April 12, I made an appointment with my primary physician and saw him that morning. Since I was a long time cigarette smoker he knew immediately what it might be and referred me to a urologist for a possible cystoscopic exam. I met with the urologist on Thursday, April 15, and he wanted to do a cystoscopic exam that afternoon but I had conflicts that prevented it. We made an appointment for the following Monday when I returned for the cystoscopic exam.
The exam revealed a tumor in my bladder, and the urologist scheduled me for a cystoscopic procedure at the local hospital for the next Friday, April 23. A transurethal resection of the bladder tumor (TURBT) was performed. This was a fairly straightforward outpatient procedure; I checked in at 7:30 a.m., was taken to the operating room around 11:30, was out of recovery and back in my room by 2:30, and home by 4:30. I was cautioned not to do any lifting for about a week, and except for a couple of days of decreasingly painful urination, there were no problems.
I met with the urologist on Tuesday, May 11, to review the pathology report and make plans for additional treatment. Pathology reported Grade III/III Transitional Cell Carcinoma (TCC) with some muscle invasion. The urologist explained that this one could kill me. According to him, there was no EFFECTIVE radiation or chemotherapy for bladder cancer, and he scheduled a radical cystectomy for July 6. A radical cystectomy removes the bladder, prostate and area lymph nodes and in the process runs a section of gut through the abdomen to transport urine into an attached bag, and it produces impotency. Also, the five-year survival rate was only around fifty percent even with the surgery.
None of the above options appeared that appealing and through friends we heard of a urologist at the Cleveland Clinic who might give a second opinion. Talked to him on the phone; he agreed and we faxed the Pathology report and the report from a later CAT scan. After reviewing them he also recommended a radical cystectomy. Still not satisfied I went back to my primary physician at the HMO and asked for additional referrals, and I also began to scour the Internet for anything I could find on bladder cancer.
A former college roommate and friend for almost forty years, an Associate Professor of Health & Performance Sciences at a major university was able to supply an excellent starting list of URLs.We also consulted my wife’s sister who had survived a gynecological cancer that had metastasized to her bladder about twelve years ago She also happened to be fluent in Chinese and had her normal treatments reviewed by an acupuncturist and some additional treatments by that person. Her primary offering was that she thought that ATTITUDE was over half the battle. The wife also has an uncle that has survived bladder cancer. All the deaths in my family have been due to heart attacks or strokes and I am not sure that cancer by association has been given a proper investigation. However, if there is anything to it, hopefully, the survival factor is also “catching.” I also managed to finally stop smoking over the Memorial Day weekend.
My researches very quickly informed me that it was not necessary to do the operation as soon as we had it scheduled. At another meeting with the urologist, June 14, I canceled the surgery for the time being while I continued to gather data. My primary physician referred me to an oncologist that I met with and was examined by on June 15. He also said that radical cystectomy was the recommended treatment and anything else would be second best. However, he said the regular cancer conference at the local medical center was the next Monday and he would discuss my case there.
He called back the following Tuesday, June 23, to say he had scheduled me with a radiation oncologist at the medical center the next week. I met with and was examined by radiation oncologist on June 30. We discussed a combination of radiation and chemotherapy to begin after another cystoscopic exam and/or procedure to insure that my bladder was still clean or perform a second TURBT if necessary. He would give daily doses of radiation while the oncologist supervised the administration of cisplatin and perhaps other drugs. The cisplatin has been shown to enhance the effects of the radiation. He expected only minor problems from the radiation but was not sure about the chemotherapy.
About this same time I began to run across abstracts of papers from Dr. Shipley’s team at Massachusetts General that had been doing the radiation chemotherapy combination for about ten years. They offered a bladder and sexual function saving option on a regular basis to patients with my grade and stage of bladder cancer. They had shown in several trials and had reported in medical journals for over ten years and that their survival rate was at least as good as radical cystectomy. However, their patients were much more likely to have both bladder and sex life that functioned normally.
I located a source on the Internet to obtain the complete papers from the MGH team:http://www.ingenta.com/ . Since they also did work on prostate cancer, after perusing the paper titles and abstracts I ordered seven that pertained to my case. They were faxed to me in a few hours later and my credit card was charged $160, which I consider cheap for the information I was able to obtain and the speed at which I was able to get them. I had read and reread the papers by the time I met with the oncologist again to see what effects I might expect from the chemotherapy. He also did not expect much more than perhaps some nausea, which they could easily treat. We discussed my researches, the MGH results that seemed to disagree with some of the things he had told me. Initially I think he was somewhat taken aback but he perused a couple of the MGH papers and quickly came around.
I also talked with Dr. Shipley on the telephone since I was considering going to MGH if necessary. He did not feel that they had anything to offer over what I had available locally. The major difference that I had noticed was that Shipley’s team used a twice per day radiation and they were proposing only once per day locally. Dr. Shipley informed me that they had no evidence that twice per day radiation made any difference.
I met again with my urologist and informed him of my decision to pursue the bladder saving protocol. I had expected some arguments but he quickly came on board and said that if anyone were a candidate for that procedure, I certainly was. He said that he thought we had caught it early enough, that there was only
a very slight muscle invasion and that he had gotten all of it with the original TURBT. He agreed to perform another cystoscopic exam and if necessary TURBT to ensure that the bladder was as clean as possible before beginning the combined treatments. This was done on August 5; the bladder appeared clean but he also took four samples for biopsy.
The treatments began Monday, August 16 with radiation at 3:30 p.m. My office has a flex work schedule and I had arranged to switch my schedule from six a.m. to three p.m. I could drive to the local medical center in about ten minutes. Chemo takes four hours and is done on Tuesdays at eleven so I can go from there to radiation. This schedule allows me to miss only three and a half hours per week of work on Tuesdays.
I met again with the urologist on August 25 to review the biopsies and got both good news and bad news it seems. There were no cancer cells in three random samplings of the bladder but there were still cells at the previous tumor site. The radiation treatments are scheduled to end the first week of October, and we have scheduled another Poke and Peek for the middle of November to determine if the cells are still there.
So far there have been no adverse effects from the treatment. I am given an anti nausea pill (1mg. Kytril tablet (granisetron) to take an hour before the chemo is scheduled. I have been able to have my lunch while I was getting the chemical fill up. There was a slight looseness in the bowel. A food list provided and a dietician said to stay away from milk and milk products. Very difficult for me since I begin my day with about a quart sized glass of milk along with some citrus juice and vitamins. The dieticians recommend lactose free milk that seems to have taken care of the problem.
Although I have attempted to avoid the radical cystectomy at all cost, that may still available as a fall back position. One of the reasons for trying this option was that it did not seem to cost anything, the survival rate did not go down for the ones doing it. The surgery is still an option for those for whom the combined modalities treatment does not work. However, scaring from the radiation may be severe enough in some to prevent the use of intestine to construct an internal bladder substitute. This could limit the options to an ileal conduit and external appliance. I have accepted that risk for the opportunity to perhaps keep my plumbing functioning normally for many more years.
The above material was posted approximately September 10, 1999. This new material as of January 10, 2000, is intended to update the information.
Treatment continued as outlined above through the first week of October 1999. The final weekly Cisplatin treatment was September 28 and the final radiation was a week later on October 5. On October 8 we drove to Fargo, Georgia to begin a previously planned three-day canoe camping trip across the Okefenokee Swamp with some friends. We returned from what I thought was a fantastic ending to the end of treatment on October 11. However, at my next office visit with my oncologist I was informed that there was still more to come. There would be additional chemo treatment and this time there would probably be some hair loss and probably at least a couple of days of being wiped out. He was right on both of these predictions.
There would be two long multiple sessions of ten to twelve hours administering Paclitaxel (Taxol), Manitol, Cisplatin (again) and Gemcitabine thirty to forty-five days apart. About ten days after each of the long sessions there would be a shorter two to three hour session of just an additional dose of Gemcitabine. We timed the treatments so that they could be completed and not interfere with our plans for the Thanksgiving and Christmas Holidays. In between the two Chemo combos I had another cystoscopy and biopsy scheduled to get a final reading on the effectiveness of the treatment.
I had the cystoscopy/biopsy on Friday, December 10 and came away from it somewhat concerned. After the procedure the urologist told me that the site of the former tumor was "enflamed and said he could not tell if it was a result of the radiation or an indication of additional tumor activity." Since the whole bladder had been radiated it made no sense to me for the former tumor location to be any more inflamed than the rest due to radiation. I was pretty well convinced that the inflammation could only be from additional tumor activity.
I met with my oncologist on Tuesday, December 14 to review the pathology report and schedule the final two chemo sessions. I figured we would probably also discuss other options since I was already convinced that the report was going to be bad. He had not received the report when we met and had to call over to have it read to him over the phone about half way through what seemed an eternity, he looked over and gave me a "thumbs up." There was no cancer in any of the samples they had taken, including that from the site of the former tumor.
Since that time, I have completed the final chemo treatments and met again with my urologist and oncologist. I have another cystoscopy scheduled for March and we will be doing them quarterly for at least the next couple of years. The oncologist also wants another CT scan but we haven’t scheduled that yet.
We are now in a monitoring mode for the next several years and hope to be able to keep the beast away for good. The primary goal has been achieved the bladder and sex life have been preserved. I know I have only won a battle and not the war. Surgery is still an option should it become necessary in the future but for now we are back to functioning in an almost normal mode.
So Far So Good – Trenches update, January 25, 2002
I have just gotten off the phone with my Urologist nurse; I had a Cysto-biopsy last Thursday and was checking on the biopsy report. After a brief computer search I heard "No malignancy in the bladder samples or unusual cells in the cytology." So now I can start breathing again until the next six-month check. I had felt pretty confident, after the procedure the doctor said it had looked good except for some signs of the radiation treatment. He added, "It is beginning to look like something else is going to have to kill you, heart attack or some other problem."
It has been two years since my last update to these pages and it will be over three years from the original diagnosis before we do the next check. This is how it has gone medically. Quarterly Cysto-biopsies in March, July, and November of 2000 and February of 2001, at which point we began six month checks in July 2001 and January 17, 2002. In addition to the Poke, Peek & Snips there was a CT scan on November 1, 2001 with the reports from all tests coming back negative. In August, in to see my regular doctor, with a complaint of some numbness in my feet I was diagnosed with Type II Diabetes. I have pretty much gotten that under control with medication, watching my diet, and trying to get more exercise. I had a blood test check for that last week too. All my numbers were either where they needed to be or was at least moving in the right directions including Trigycerides and Cholesterol which weren’t too bad to begin with. The problems with the feet began sometime after the chemo treatments so I guess the question will always be there, did that help push me over the edge?
All of that is pretty cut, dried and dull so what has it allowed me to do with my time in between the visits to the doctor and his OR. In January of 2001 I began building my first wood and fiberglass sea kayak and finished it after a couple of months. My youngest daughter moved with her two girls to St. Petersburg, Florida from Salt Lake City in April to begin Law School. So we now see them more often and they were able to join us for a large family Thanksgiving that included my brother and his wife, children and grand children. In June we flew to Oregon to watch my thirty-year-old first daughter finally graduate from college, Summa Cum Laude. Slacker that she is, she accomplished this feat while maintaining a household for a husband and two boys and driving three hours per day between home and school. She began working on her Ph. D. in the fall at Washington State U in Pullman.
Last night I finished my second sea kayak so that my lady can join me and we can explore and camp some of our deserted coastline and get more of the needed exercise for the diabetes. In short, it has been a great two years and I’ve been very glad that I have been here for it all.
If anyone reads this looking for advice and/or help with one of the toughest decisions of your life I would offer just one thing. Always remember, the doctors only do what they do to make a very lucrative living. It is YOUR LIFE make sure you do your research and actively participate in all your treatment decisions.
We were up and in the waiting room at 6:30 this morning and went in for the procedure about an hour later after prep. Another hour and the report was "Clean and looking as good as it can, we’ll wait for the biopsies but they are going to be o.k."
Three years and four months since the original dx.