Tag: chemotherapy

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Treatment Delayed!

February 18, 1997 – Treatment Delayed!

Mala and I went to visit Dr. Halberg again today for a simulation run through of the radiation therapy that was supposed to have begun on February 25. However, Dr. Halberg had spoken with Dr. Shipley and was told that the chemotherapy and radiation treatments shouldn’t begin until three weeks after the TURBT. So, I’m off the hook for three more weeks! I wasn’t terribly surprised, because the protocol, itself says that registration begins three to four weeks post TURBT.

Dr. Halberg also reported that I had a urinary tract infection, and I was put on Cipro for the next two weeks.

Next, we went to Marin General Hospital to register for the TURBT tomorrow. While this was time consuming, it was not particularly unpleasant.

I spent most of the rest of the day preparing my legal documents, including a Durable Power of Attorney for Health Care, which is a good document to have for your own protection.

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Happy Anniversary!

February 14, 1997 – Happy Anniversary!

Today, Mala and I celebrated our sixteenth anniversary. We did this by heading up to the famous “wine county” in Napa County, California. We are so fortunate to live only 45 minutes from this most beautiful part of the country. Mala had made reservations at the Silverado Inn, which we were lucky to get at the last minute. With lunch at Don Giovanni’s and dinner at Tra Vigne, we had two wonderful meals at our favorite places.

Before heading north, however, we met with Dr. Francine Halberg at the Marin Oncology Center attached to Marin General Hospital. Through Sara Huang’s guidance and support, we decided to use Dr. Halberg for the radiation therapy, which is scheduled to begin on February 25, along with the chemotherapy. The consultation with Dr. Halberg went very well as far as it could go, but she couldn’t tell me that this was going to be an easy protocol (RTOG 95-06). She mentioned that Shipley had great success with this protocol and that it was evaluated thoroughly in France and found to be very successful. She explained that I would have to be seen again on Tuesday, February 18 to do a test run to map out the area to be irradiated, which was part of the RTOG 95-06 protocol.

Before we left for the “wine country,” we stopped in the Circle Library at the Marin Oncology Center and checked out a few tapes, including one by Dr. Carl Simonton, whose work was just beginning to be noticed when my son had cancer twenty-one years ago. Another tape was by Dr. Rachel Naomi Remen.

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More Resection?

February 13, 1997 – More Resection?

I called Dr. Hoffman this morning and spoke with him about the treatment of bladder cancer with cesium chloride and/or aloe vera concentrate, and he basically said that these were not to replace chemotherapy and radiation. This was confirmed by a later conversation with Michael Broffman, who knew of Dr. Hoffman, and told us that Dr. Hoffman’s protocol was something to consider at the end of the Shipley treatments.

Then we received a call from Dr. Neuwirth. He said that Dr. Gullion had called him about the Shipley method, which requires an additional transurethral resection of the bladder tumor (TURBT), which he wanted to schedule for next week. We spoke to Michael Broffman about this and he recommended that we talk to Dr. Carroll. After further discussions with Dr. Huang, Dr. Gullion, we finally received a call back from Dr. Carroll. He said that he was out of time next week and the week after, so he wouldn’t be able to do anything until the week of February 24. He suggested that I go with Dr. Neuwirth, whom he said was a competent surgeon and could do this job effectively.

The last time I had a TURBT, there was no plan to do anything other than a radical cystectomy. Now Dr. Neuwirth would go in with the idea of doing bladder saving therapy. This could account for Dr. Neuwirth’s apparent reticence to do the second round of resection.

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I Don’t Want Abominable Surgery!

February 7, 1997 – I Don’t Want Abominable Surgery!

Friday morning, I had to have a sonogram for my gall stone. Aside from the long wait, it went fairly smoothly. When I finished, my friend, T. R. was waiting for me. We had breakfast together and talked about my options.

After T. left for work, I joined a cancer support group at Marin General led by Leslie Davenport. She had worked with my wife the previous year doing guided imagery for her hip problem that was caused by an automobile accident in 1992. I was the only man, but this didn’t stop me from trying to find out what was the best course of action. One of the women said that she had no side effects from the chemotherapy whatever!

In the early afternoon, I had another session with Yokey Kim. Once again, I had a wonderful treatment.

Then came the long-awaited appointment with Michael Broffman, a Chinese herbalist and acupuncturist, who runs the Pine Street Clinic. He has a fabulous reputation for knowing a lot about cancer, and my wife and I were blown away by his knowledge of bladder cancer. We talked at great length about alternatives to radical cystectomy. One surprising note was something that no other physician mentioned. Michael said that after seven or more years, they may have to go in for another operation for the urinary diversion. After this statement, decision was really moving rapidly towards the Shipley approach! Michael proceeded to tell us that there is a lot of bladder cancer in China and that a combination of traditional Chinese medicine and chemotherapy, with or without radiation, is the primary means of dealing with the disease.

By the time we left Michael’s office, we felt comfortable that the Shipley method combined with the protocol Michael was going to send us would offer me a better chance than just the Shipley method alone.

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The Big Surprise!

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.

The Chemotherapy Survival Guide: Everything You Need to Know to Get Through Treatment

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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.

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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.

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TURBT

TRUBT

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.

Copyright © 2004-2018, Jerome Freedman, Ph. D.