Shipley: The Bladder Saving Guru

February 1, 1997: Shipley: The Bladder Saving Guru

Early Saturday morning, I received a phone call from Dr. Shipley, which we almost missed!!! However, since I already had his office number, I called back immediately, and the nurse relayed the message to him, for he called back a few minutes later.

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The conversation revolved around likely candidates for the Shipley approach, which combines chemotherapy and radiation therapy in an effort to save the bladder. He explained how his protocol involved four weeks of chemotherapy combined with radiation, followed by four weeks off. At the end of the second four week period, a cystoscopy is performed to look for the presence of tumors. If tumors are found, the radical cystectomy is recommended. If none are found, another four weeks of chemotherapy and radiation are applied and the bladder is followed up with cystoscopy examinations every three to four months. Subsequent local superficial growths are handled with intravesical chemotherapy using BCG or mitomycin, in which the chemotherapeutic agents are instilled directly in the bladder.

Dr. Shipley discussed how they like to work with patients who have had all the tumor removed with TURBT, as his success rate increases when this is the case. As I wasn’t sure if Dr. Neuwirth had resected all of the tumor, my hopes were a bit dimmed. He even mentioned that they sometimes use cystoscopy and transurethral resection two or three times to make sure they got all of the tumor.

This conversation gave me some hope. He even stated that I could come to Boston for a consultation with himself, along with Dr. Kaufman and Dr. Heney. Shipley referred to Marin General Hospital as, “The other ‘MGH’!” and mentioned the names of Dr. Francine Halberg and Dr. Patrick Bennett. Dr. Bennett had trained with Dr. Shipley and his team of oncologists and urologists and Shipley regards him as his protégé. So the next obvious thing was to speak with Dr. Bennett.

I had originally phoned Dr. Bennett when he was on call just after my surgery to ask him what to do about my back pain. He was quite helpful then, and during the conversation I had with him after speaking with Shipley he was also very nice and understanding. He told me what I already knew about the Shipley approach in that it worked best with all of the cancer resected, but that he would have to discuss my case with Dr. Neuwirth.

This was the day of many visitors and phone calls from well-wishers. For example, J. D. brought us dinner from Kitty’s place and brought me a copy of Andy Weil’s book, Spontaneous Healing, which I have been reading ever since. Late in the evening, Dr. Rossman phoned me to tell me that he had spoken with Dr. Gullion, Dr. Keith Block (from Evanston, IL), and John Boik, author of an excellent book on cancer research and alternatives.

Radical Is As Radical Does!

January 29, 1997 – Radical Is As Radical Does!

Around noon on this day, I received a phone call from Dr. Neuwirth. He wanted to see me in his office at 5:00 P. M. that afternoon. He also told me that I had a bladder cancer and that he needed to explain to me all of my options.

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Instead of panicking, I immediately started a search on the World Wide Web for “bladder cancer.” I found many references and lots of good sites. I printed off several of them to take with me to Dr. Neuwirth’s office. These included Bladder Cancer, Understanding Bladder Cancer, MedicineNet’s Bladder Cancer, and About Bard BTA Test. Of these, the first turned out to be the most useful because of the way it talks about treatment by stage of bladder cancer.

We brought R. D., the father of a childhood friend of my wife, and Dr. Rossman to the meeting with Dr. Neuwirth to help us remember the conversation and all that we said. It is always a good idea to take people you trust so that they can bear witness to your conversation and possibly hear things that you can’t because of your emotional involvement with the case.

Dr. Neuwirth started to explain the “stage” and “grade” of the tumor based on a preliminary verbal report from the pathologist. Once he said “T2,” I dropped the Bladder Cancer paper pointing to the section on T2-4 tumors. His jaw practically fell to his desk! He said, “I wouldn’t put it that bluntly, but that’s basically what we have here!” He also mentioned that I had some carcinoma in situ and a bit of dysplasia, which are abnormal cells. Later, we found out that I also had some atypia cells from Dr. Torigoe (see below).

He proceeded to explain the ins and outs of the medical alternatives for treatment of stage two bladder cancer. The choices were basically

  1. Cystectomy – partial or radical
  2. Radiation
  3. Chemotherapy

Dr. Neuwirth, being a surgeon, naturally recommended radical cystectomy. We asked him all of the questions in Appendix 1.

My son was born on January 29, 1969. Today he was 28 years old. It’s funny how life is. I had to give him the bad news on his birthday. On March 7, 9, 14, and 16 he was scheduled to have a leading role in La Boheme, as Marcello. I wanted to see him perform and didn’t want any disabling therapy to begin before I had a chance to see him.

That night, we spoke with Dr. Sara Huang, a radiation oncologist at St. Mary’s Hospital in San Francisco. She has long been a friend of the family and was devastated by the news. She mentioned that the “Gold Standard” of treatment for bladder cancer was radical cystectomy. However, she had some hopeful information about the possibility of chemotherapy used in conjunction with radiation therapy and recommend that we consult Dr. Wayne Torigoe at Marin General.

TURBT

January 27, 1997 – First Hospital Stay, Continued

My refusal to sign the operation afforded me another whole day of waiting. In the morning, I had visits from Dr. Belknap and Dr. Neuwirth, both of which were very helpful in pointing out the pros and cons of the alternative anesthetic methods, but I still hadn’t made up my mind. I wanted to speak with an expert.

Dr. Neuwirth tried to prepare me for the best case scenario, which would involve complete resection of the bladder tumor followed by quarterly inspections with a cystoscopy and possibly coupled with chemotherapy agents inserted directly in the bladder. I found this discussion rather informative, but would have preferred a more accurate reading of my tumor.

Since my daughter was ill, my wife couldn’t be with me the whole time, so I spent the day receiving phone calls and visitors, and listening to classical music, and Dr. Rossman’s tape. Since I couldn’t eat or drink, my thoughts continually turned to food, especially when my roommate ate his meals. In between time, I continued my meditation and visualization practices, which kept me from getting to anxious about the ensuing operation.

At around 3:00 P. M., my wife returned to the hospital, just in time for the meeting with the anesthesiologist. His name was Christophe Dannello and he was very nice. He carefully explained the various options, and with his guidance, I decided to go with the epidural.

TRUBT
Transurethral Resection of Bladder Tumor (TURBT)

Around 6:30 P.M., they came to wheel me off to surgery. I grabbed Dr. Rossman’s tape and headed off to the operating room. I was given a sedative intravenously and placed on the table. A moment later, a small needle was applied to my lower back and I was turned over and placed into position. The oxygen feeder was placed in my nose and my legs were positioned in place for the surgery.

Then… I was gone! I woke up in the recovery room and spent what seemed like only fifteen minutes there. I was taken back to my room and my wife was with me for the next half-hour or so. Then she had to get home to the children, so there I was, lying flat on my back with a catheter in me. I started to feel pain from the epidural and was given “candy” – vicodin. This controlled the pain.

I proceeded to do my “mind story” and had a fairly good night sleep until I was rudely awakened for vital signs around midnight. Luckily, the rest of the night was uneventful, even though I was leaking blood through my catheter.