5. UC Davis. A Tale of two Appointments.
On January 10 of 2018, Juli and I arrived at the UC Davis Urology Clinic in Sacramento for my first appointment. Anticipation was high for the chance to begin treatments, to begin attacking this disease that was threatening my mind and body. As we were taken to an exam room, we soon learned that many of the medical documents from Yuba City had not arrived, and our Doctor was going to be flying a little bit blind. No matter. It was soon made obvious that I should have been referred to Medical Oncology, not Urology. It comes down to the simple fact that Urology does surgery, Oncology fights the long term battles.
The doctor was however very well-informed and educated, actually a member of a team that includes the oncologists, and he expedited a referral and subsequent appointment across the street at the Cancer Center. He also spent time explaining to us the goals and side-effects of the standards of care.
Number one was the Androgen Deprivation Therapy treatments mentioned in an earlier post. In essence, a shot is given once every 3 months that destroys the production of testosterone. It has been discovered that many if not most prostate cancer cells really love testosterone and if they are deprived of testosterone they will slow down their rate of growth or even stop growing altogether. Eventually, cancer cells resistant to this therapy will begin to dominate and grow which is why this is not a cure but rather a form of control. It would not be known whether or not this would work on my cancer until it has been tried.
Two additional treatments have recently been approved by the FDA and they improved outcomes in the patients who participated in the trial. One is immediate chemotherapy - as opposed to waiting to use it later when the resistant cells begin to dominate. The other is a daily pill taken for the remainder of life.
Overall, the appointment was encouraging, giving us hope to believe that maybe we could die of old age rather than cancer. It was the first time we felt the downward spiral slow. Unfortunately no treatment would begin until the oncologist could be seen, so still we waited while feeling slowly poisoned inside.
Finally, our appointment with the oncologist arrived on January 16th and we went anticipating a plan of attack begun. The Oncologist was a very capable doctor who very carefully listened and answered all of our questions. When I finally asked the question I dreaded to ask: "What is my prognosis?" The answer deflated our optimism as the words "3-5 years" were revealed.
Lord Jesus Christ son of God, have mercy on me a sinner.
The doctor recommended that we begin the Androgen Depravation injections as soon as they could be arranged, also suggesting that chemo was the best choice in my case as opposed to the daily pill. An appointment was made for the first injection within a week, chemo to begin a month or so later to give time for injection side effects to be made known as well as a PSA screen to determine how the cancer was going to respond to the injection.
The next several days were pretty dark. All the fears returned as it appeared that I would need to wrap up my affairs on earth in a much shorter time than I had hoped. But then, my sister had months, while I am hoping for years...
In the mean time, I received a call from a volunteer organization through UC Davis called the Peer Navigator program. A gentleman explained that if I was interested, he would choose an individual with similar diagnosis who was ahead of me in the process and could answer questions and offer encouragement. I agreed to accept the help. He said he would look for the right man and get back to me when he could put us together.
A week or so later, still prior to my first injection, he called me and said he had found someone who was willing to be my peer navigator if I was still willing. I said yes, so he said I should expect a call in a couple of hours. The call came on time and a man named Rollie introduced himself to me. I really did not want to waste time for either of us if his diagnosis was dissimilar to mine. How would it encourage me to hear from a man with stage 1 prostate cancer or who had lung or brain cancer. I might be inspired, but how would it help me understand what I myself should expect? So before we began I asked Rollie to tell me his story. He began by telling me he was diagnosed with Stage 4 cancer at age 60. (I'm 58) He then told me that his PSA count was 298. (Mine was 26.1) He then said his Gleason number was 9. (Mine was 8 - Gleason number is basically a measure of the cancer's aggressiveness) He told me the cancer was in his pelvis, spine, and ribs. (Mine is in my pelvis only)
I decided I could trust him.
Then he said something that nearly caused me to cry with hope. He said "I am about to turn 75."
I could not wait to get home and tell Juli. Yes, Rollie may be a poster child because he has survived Stage 4 cancer for 15 years, but he survived by aggressively treating the cancer, doing drug trials, and never giving up when his PSA would begin to rise again. I'm OK with that. Let the battle begin.
Lord Jesus Christ son of God, have mercy on me a sinner.
An appointment had been made for Monday, January 22 to receive my first injection of Lupron, a drug designed to destroy the testosterone in my body. The side effects to this treatment are numerous, but if among them is longer life, I would embrace them willingly.
The doctor was however very well-informed and educated, actually a member of a team that includes the oncologists, and he expedited a referral and subsequent appointment across the street at the Cancer Center. He also spent time explaining to us the goals and side-effects of the standards of care.
Number one was the Androgen Deprivation Therapy treatments mentioned in an earlier post. In essence, a shot is given once every 3 months that destroys the production of testosterone. It has been discovered that many if not most prostate cancer cells really love testosterone and if they are deprived of testosterone they will slow down their rate of growth or even stop growing altogether. Eventually, cancer cells resistant to this therapy will begin to dominate and grow which is why this is not a cure but rather a form of control. It would not be known whether or not this would work on my cancer until it has been tried.
Two additional treatments have recently been approved by the FDA and they improved outcomes in the patients who participated in the trial. One is immediate chemotherapy - as opposed to waiting to use it later when the resistant cells begin to dominate. The other is a daily pill taken for the remainder of life.
Overall, the appointment was encouraging, giving us hope to believe that maybe we could die of old age rather than cancer. It was the first time we felt the downward spiral slow. Unfortunately no treatment would begin until the oncologist could be seen, so still we waited while feeling slowly poisoned inside.
Finally, our appointment with the oncologist arrived on January 16th and we went anticipating a plan of attack begun. The Oncologist was a very capable doctor who very carefully listened and answered all of our questions. When I finally asked the question I dreaded to ask: "What is my prognosis?" The answer deflated our optimism as the words "3-5 years" were revealed.
Lord Jesus Christ son of God, have mercy on me a sinner.
The doctor recommended that we begin the Androgen Depravation injections as soon as they could be arranged, also suggesting that chemo was the best choice in my case as opposed to the daily pill. An appointment was made for the first injection within a week, chemo to begin a month or so later to give time for injection side effects to be made known as well as a PSA screen to determine how the cancer was going to respond to the injection.
The next several days were pretty dark. All the fears returned as it appeared that I would need to wrap up my affairs on earth in a much shorter time than I had hoped. But then, my sister had months, while I am hoping for years...
In the mean time, I received a call from a volunteer organization through UC Davis called the Peer Navigator program. A gentleman explained that if I was interested, he would choose an individual with similar diagnosis who was ahead of me in the process and could answer questions and offer encouragement. I agreed to accept the help. He said he would look for the right man and get back to me when he could put us together.
A week or so later, still prior to my first injection, he called me and said he had found someone who was willing to be my peer navigator if I was still willing. I said yes, so he said I should expect a call in a couple of hours. The call came on time and a man named Rollie introduced himself to me. I really did not want to waste time for either of us if his diagnosis was dissimilar to mine. How would it encourage me to hear from a man with stage 1 prostate cancer or who had lung or brain cancer. I might be inspired, but how would it help me understand what I myself should expect? So before we began I asked Rollie to tell me his story. He began by telling me he was diagnosed with Stage 4 cancer at age 60. (I'm 58) He then told me that his PSA count was 298. (Mine was 26.1) He then said his Gleason number was 9. (Mine was 8 - Gleason number is basically a measure of the cancer's aggressiveness) He told me the cancer was in his pelvis, spine, and ribs. (Mine is in my pelvis only)
I decided I could trust him.
Then he said something that nearly caused me to cry with hope. He said "I am about to turn 75."
I could not wait to get home and tell Juli. Yes, Rollie may be a poster child because he has survived Stage 4 cancer for 15 years, but he survived by aggressively treating the cancer, doing drug trials, and never giving up when his PSA would begin to rise again. I'm OK with that. Let the battle begin.
Lord Jesus Christ son of God, have mercy on me a sinner.
An appointment had been made for Monday, January 22 to receive my first injection of Lupron, a drug designed to destroy the testosterone in my body. The side effects to this treatment are numerous, but if among them is longer life, I would embrace them willingly.
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