Tag: radical cystectomy

Posted on

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.

>>> Next…

Posted on

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

>>> Next…

Posted on

Pissing Contest

February 5, 1997 – Pissing Contest

M. L. T. picked up J. so that we could meet with Dr. Peter Carroll, the Oncological Urologist that everyone said was the best in the Bay Area. L. C. met us at the U. C. Medical Center in his office. After a brief case history and yet another prostate exam, Dr. Carroll once again explained the standard of treatment for bladder cancer: radical cystectomy. We were encouraged by his some two hundred bladder removals and eighty urinary diversion operations. We felt that this was the man to do any cutting, if any was to be done. We asked him all the questions in Appendix 3. We left there feeling confident that Dr. Carroll could handle any surgery that I might need.

Later that afternoon, I saw my therapist, Suzanne Schmidt for the first time since November. She was going through some radical changes in healing herself, which included almost daily visits to Yokey Kim. We started a new therapy involving self-massage of the chakras (seven energy points within the body described by Indian yogis) and the mental and emotional pain associated with them. We were quite in synch during the whole session, which lasted over two hours. We seemed to be healing each other, but I still did not get a clear idea of how to treat my bladder cancer. I left her house feeling very good!

Suzanne had recommended that I try to see Kim every day, if possible, so when I got home I called him. He said that I could come in at 6:00 P. M., which I did. The second treatment was better than the first, in that I was more relaxed and knew what to expect.

>>> Next…

Posted on

Oncological Consult

February 3, 1997 – Oncological Consult

Finally, one of my girls was recovered from the horrible virus that has struck our community, but we still had the other one at home. Having the girls around makes strategic conversations a little difficult. However, we were scheduled into Dr. Gullion this morning and I got T. W. from my conscious evolution group to stay with J. J. and L. once again consented to be present at the consultation with us.

heart-954975_640

We sat down with Dr. Gullion and he was wearing a pin shaped like a heart over his pocket. He was tall and had a very welcoming smile. However, due to the seriousness of my illness, he was a bit serious himself. He sent the others out of the room for a few minutes while he examined me.

When the others returned to the room, he asked me what was wrong (as if he didn’t know) and I explained that I had a stage four bladder cancer that was highly active along with carcinoma in situ and some dysplasia and atypia cells. He was impressed with my understanding, and proceeded to write out my diagnosis and treatment alternatives “Patient Communication Sheet.”

You have: Papillary transitional cell carcinoma, Grade IV/IV T2 (T3a), N0, M0

Treatment:

  1. Radical Cystectomy – standard therapy
  2. Neoadjuvant therapy – Bladder sparing

Chemotherapy – MCV x 2 cycles followed by radiation: 4000 rads with cisplatin (2 cycles). Then re-evaluate with cystoscopy and biopsy. If (-) – radiation – close follow-up. If (+) – surgery.

While this was slightly different than the Shipley protocol as I understood it, I could see that he had done his homework after speaking with Dr. Rossman.

We continued to ask questions (see Appendix 2, available on request), and left with the feeling that radical cystectomy was the way to go. We discussed both options with J. and L. over lunch. During that time, I decided to go to their house with them in order to use their Jacuzzi bathtub. As we passed the tennis courts, I was filled with grief, as I surely would rather be playing tennis. That night I was starting to come down with a cold, which my wife treated homeopathically.

This is a good day to take just a minute and go see the amazing trailer to The Truth About Cancer – A Global Quest… it will blow your mind:

Posted on

Treatment Options: Radiological Consult

January 30, 1997 – Radiological Consult

The next day we met with Dr. Torigoe. This time we took J and L with us. They have been friends for the whole time my wife and I have been together, and they have and extremely rational outlook on life. Naturally, we would have liked to take Dr. Rossman too, but he has his practice and we didn’t want to bother him.

We had a very long discussion with Dr. Torigoe. His patience and understanding were remarkable. He, too, thought that the “Gold Standard” for treatment of bladder cancer is radical cystectomy. But, as he put it, “Radiation and chemotherapy are a viable alternative, especially if the radical cystectomy is too morbid for some people.”

When I explained what transpired in our conversation with Dr. Torigoe to Dr. Rossman, he recommended that I contact Dr. Dave Gullion, who he was planning to see the next day at Commonweal. Dr. Gullion is a medical oncologist in the same building as Dr. Torigoe and he is also associated with Marin General Hospital.

bridge-1276180_1920

 

Posted on

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.

iphone-313845_1920

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.

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