On January 16 and 27, 2014, we met with Dr. Charles Ryan and his fellow, Dr. Adam Siegel.
Adam gathered a lot of information, entered it into the computer and then brought in Dr. Ryan.
At first, Dr. Ryan thought I would benefit from neoadjuvant chemotherapy and even recommend a plan. Upon further review, he decided to send my case to a tumor board to get its recommendation.
The tumor board met on January 17 and it was unanimous that I needed my bladder taken out. There were eight members on the tumor board and four of them were oncologists like Dr. Ryan. He was out of town, so the case was presented by Dr. Siegel. All four of the oncologists recommended neoadjuvant chemotherapy.
The second meeting with Dr. Ryan was challenging and took place on January 27, 2014. The chemotherapy plan suggested by the tumor board consisted of four cycles of chemotherapy, each four weeks.
Dr. Ryan corrected the plan to four cycles of chemotherapy, each three weeks. Cispltain and gemcitabine are to be administered on the first day of each cycle, along with anti-nausea medications, gemcitabine with anti-nausea drugs on the eighth day, and then a week off. Yay! I had cisplatin 17 years ago along with 5FU.
When they told me I was scheduled to start on January 30, I balked. I could not imagine fighting rush hour traffic to get to UCSF by 9:00 in the morning, have to park, and be there all day.
I suggested that I talk to Dr. Gullion about administering the treatment close to home, and they accepted my suggestion. I had already scheduled an appointment with him for January 31.
February 6, 1997 – The Big Surprise!
The next morning, my wife and I had another helpful conversation with Sara Huang. Once again, she was emphasizing the possibility of saving my bladder, but we were predisposed to think about surgery.
Then came our consultation with Dr. Gullion who had the tumor board results from early in the morning. To our shock, amazement and surprise, the tumor board came to the decision that I could take my choice between radical cystectomy and the Shipley treatment! They felt that the entire visible tumor had been removed by Dr. Neuwirth and my chances were the same with either treatment. We were stunned! We had no idea that this would be the result of the tumor board! Now what was I going to do?
One thing was clear: I didn’t want abominable surgery! After speaking with Dr. Belknap about the results of the tumor board, I received a call from J. W., a close friend of mine from my enneagram centers group. She had gone through surgery and chemotherapy for ovarian cancer and was finally beginning to feel more like herself. I asked her what she thought of my two options, and she said that abdominal surgery was horrible. She would vote for the chemo and radiation. I liked her reasoning and knew that she was speaking personal experience.
Joan also gave me advice in the following areas. She suggested that I check with my insurance company to see if I was covered for a social worker to come in the house and help out when I was going through the worse part of chemotherapy. She also said the cisplatin was very hard on the kidneys and that I should allow for eight hours of rehydration. She prepared me for short-term memory loss during chemotherapy, and wanted to make sure that I had a cocktail of drugs. The typical Shipley treatment is to apply cisplatin with methyltrexate and vinblastine together, so I may not have to worry about this. However, she was careful to emphasize that I should carefully check what is being fed into me because there have been many cases of chemotherapy overdoses! She cautioned me to stay away from anti-nausea drugs and use sea-bands instead. She recommended getting a hold of the National Cancer Institute (1-800-4-CANCER) for specific information about the drugs I’ll be taking and how to best deal with the side effects. She recommended taking caraloe and aloe vera combination with vitamin E and suggested that I read, “The Chemotherapy Survival Guide.”
By the time I finished my conversation with Joan, I was on my way to my decision not to have radical cystectomy.