November 1, 2005
Today is four months, to the day, since I received my last proton radiation treatment. I was told to wait four months and then get my PSA checked. Hereafter, I am to have my PSA checked every six months. I am to send the information to the LLUMC Proton Therapy Center and it will be included in a continuing study of the effectiveness of proton treatment of prostate cancer.
Why is this post treatment PSA important?
First, a rising PSA after treatment is an indication that the cancer has returned. There are several guidelines but the most used is the ASTRO guideline that states three consecutive increases in PSA over 18 months is an indication of biochemical relapse. Another indicator used is two rises in PSA of >.5ng/mL.
Second, the nadir PSA (the lowest PSA achieved after treatment) is a strong indicator of bNED survival rate. bNED is biochemical indication of treatment failure, otherwise, using a change in PSA to determine if you remain disease free.
The Ten Year Study of proton patients at LLUMC shows that the biochemical disease free ten year survival rate (bNED) with a post proton radiation of <.51 ng/mL is 87%. For a nadir PSA of .51 – 1.0 ng/mL, the survival rate is 69%. For a nadir PSA >1.0 ng/mL, the bNED survival rate drops to 25%!
Obviously I am concerned to see what my nadir PSA is and I definitely want it to be <.5!
I am not too concerned though since I chose to come to Panama City Beach, FL with my oldest son and his family for a week and to watch him participate in the Ironman Triathlon on November 5th. Also, you may remember that the day before my last treatment, Dr. Luu said I had a 100% chance of being cured! And finally, all through this time, Kay and I have sought direction from the Lord and we are confident that He has guided us each step of the way, and whatever the outcome, our trust is in Him!
Some trust in chariots and some in horses, but we trust in the name of the LORD our God. Psalm 20:7
With that kind of confidence, I decided to put my PSA test off until November 8. And today? I am enjoying the beautiful white beaches of Panama City Beach with my grandchildren!
See you November 8th!
November 8, 2005
I decided to go back to my family doctor for a physical and blood work including my PSA. I was disappointed to learn that unlike my urologist, where I get the PSA results the next day, it would be Monday November 14 before the results came back.
November 14, 2005
I called the doctor’s office to get the results of my PSA from last week. I was surprised and disappointed to learn that it was 1.56. I don’t know what it could be. Thinking back, the doctor did a DRE prior to the blood work. I know that can elevate the PSA. That was stupid of me! In addition, I fell on the stairs at the condos in Panama City Beach and I still have a lot of pain in my tailbone. I don’t know if that would affect the PSA or not. Maybe the inflammation there is impacting my PSA.
I considered calling Dr. Luu at Loma Linda but decided to wait until I get another PSA.
I then called my urologist to see if I could get a PSA today. That is where I was diagnosed with prostate cancer and all my pretreatment PSAs were done there. I was told that I could go in later in the afternoon.
I went to the urologist and after checking my records, they said they can’t do a PSA without me first seeing the doctor. I haven’t seen him since last April. Since I don’t have an appointment that could take a while!
I decided to call my family doctor and go back there. I got an appointment for Tuesday morning. Unfortunately the earliest I can get the results are Friday since they send the blood work out.
Nothing seems to be working for me right now.
November 15, 2005
Got my blood drawn this morning. Guess there is nothing I can do but wait until Friday for the results.
November 18, 2005
Kay called the doctor’s office for me. My PSA is 1.81!
Now I don’t know what to think. First I was expecting <.5 and it was 1.56. Then I was expecting it to go down and it went up to 1.81! I am really concerned and somewhat confused. Kay is just as concerned or even more so. I can tell she has been crying. What an emotional roller coaster this is!
Lord, what do I do next?
November 20, 2005
Today Pastor Jerry preached on thanksgiving. The real issue is not so much being thankful for what we have, but realizing that we are totally dependent on the Lord for everything! I realized that all these months I have been saying that I am fully dependent on and trusting the Lord, and whatever the outcome, that would be OK because I believe I have sought His direction and have been obedient. But, when it came down to the events of the last two weeks, I realized my trust has been more in the proton therapy than on the Lord.
Lord, I was wrong, I repent, thank You for forgiving me!
November 21, 2005
Kay sent a fax to Dr. Luu at LLUMC today with questions about my PSA. If I don’t get a response soon I will call him.
I also sent an email to Proton Bob at the Brotherhood of the Balloon to see what they might know about my high PSA.
November 22, 2005
I did a lot of research on the internet last night about nadir PSA. I discovered that with a radical prostatectomy, you reach the nadir right away because the prostate and the cancer cells have been removed.
But with radiation, the prostate and cancer cells are not removed, they have been radiated but they are not all dead. And because the rate at which they die varies, it could take months or even years to reach your nadir PSA.
One study of radiation treated patients had a median time to nadir of 27 months. Another had a median time of 36 months. Another study said that it could take from 3 months to 102 months to reach the nadir PSA.
One website gave this explanation:
Because radiation’s effect is gradual; it generally takes two or even three years for PSA to hit rock bottom. Some men reach this nadir quickly, as soon as three months. Rarely, it can take much longer—as long as 10 years. Ideally, once PSA has reached its lowest level, it should stay there.
Some doctors consider a man cured if he has a PSA between 1.0 and 1.5; others even assume that a man has been cured if his PSA after radiation is in the “normal” range— lower than 4.0. But a PSA of 1.0 to 1.5 means that 10 to 15 grams or more of viable prostate tissue could still be there in the body (because the PSA level in the blood is about 10 percent of the weight of the prostate). Theoretically, even if there is no cancer in this tissue, it could still become cancerous in the future. Thus, after any form of radiation, the PSA level should eventually fall to less than 0.5, and ideally, to less than 0.2.
I began to think about the studies on radiation and how it affects the cells. We were told that the radiation actually breaks the DNA chain. If only one side is broken, it can repair itself. If two sides of the DNA chain are broken, the cell cannot reproduce itself.
Finally things began to make sense. Radiation breaks the DNA chain in the cancer cell, it doesn’t kill the cell. When the cell tries to reproduce, if both sides of the chain are broken, the cell dies. Not all cells have the same life span. Those that try to reproduce quickly, die quickly. Those that don’t try to reproduce until later don’t die until later.
That means that when you receive radiation treatment, even if the treatment is 100 % effective, you could still have live cancer cells in your prostate. That means that you could still have an elevated PSA. It also means that you won’t reach your nadir PSA until all the cancer cells have tried to reproduce and die. That could take months or years.
This is also consistent to what the doctors and scientists said about the side effects of radiation therapy. I was told that I may not experience all the side effects until months or even years later. Why? Because the good cells are still there and working, but, when they go to reproduce themselves, they will die if the radiation has broken the DNA chain. Then the side effects will begin to show up.
Why didn’t the doctors tell me this? Why did we have to go through days and weeks of worry when a simple explanation would alleviate all concerns?
I am even more determined now to get a web site up that gives this kind of information to men who want to know what is happening and how it is happening.