Changed primary care physicians in June of 2016. With the change all new labs. My PSA had jumped from 2.8 a year ago to 5.1. He wanted me to see a Urologist. The first visit was family history which included both my father and uncle having prostate cancer. Second visit was the biopsy. It came back with 7/12 cores as cancerous and a Gleason of 6.

The Urologist gave me two choices, either surgery or radiation at the center he was a partner in.

I started my research; ruled out surgery after watching a YouTube video. I researched my father's treatment. He had IMRT which led to him getting bladder cancer; I ruled out IMRT.

The BOB website led me to Proton Therapy which I ultimately chose.

Nine weeks in Loma Linda. The first 7 weeks were a walk in the park; exercise and site seeing. My wife and I were really enjoying our time in Loma Linda. Then on the weekend of the seventh week, my urethra collapsed and I had to be catheterized. Then two weeks after the catheter, I got an infection in my bladder from the catheter. I had to be admitted to LLUMC for two days to fight the infection.

I completed treatment and got the catheter out on the 45th day.

We were happy to go home; however, my immune system had been compromised by both the Proton Therapy and the infection that when I got home I was back in the hospital two weeks latter with Valley Fever (a fungal infection native to the Southwest). I have started anti-fungal treatment which I will likely be on for most of the coming year.

My first post treatment PSA is scheduled for March 2017. However, because of the Affordable Care Act I could not get insurance that would allow me to see any of my doctors so I have moved back to California so that I could get insurance that would allow for my follow-up care.

We were told that 1 in 1000 patients getting Proton at Loma Linda has to be catheterized. Up until that problem treatment was easy with no side effects.

I am now four months post treatment, first PSA is 2.2, no side effects to report. I am slowly getting better from the Valley Fever I contracted post treatment.

10 month PSA check shows an increase in my PSA. Talked with LLUMC, they indicated that this was not uncommon. I had not thought about my treatment until I got my PSA results. The fear that I had before my treatment has returned.

Just received my PSA 13-month post treatment. After a spike in my PSA at 10-months, it went down to 2.1. Frankly, it was a relief that it is headed down again.

I feel good, with really no post treatment problems.

Latest PSA came in today at 1.4. Feeling good, no side effects. Next update latter this year.

Just got my 2-year PSA. It has gone up; spoke with my urologist, he is not concerned. I had a back injury that required a course of steroids just prior to my PSA. He thought that the steroids likely influenced my blood work. We are scheduled for my next PSA in June.

My PSA has gone up twice this year (2.0 in January), (2.3 in June) and 2.2 in July. I just had a Axumin PET Scan at UCSF in San Francisco. I am awaiting results as my Urologist is on vacation.

Both of the PSA results this summer was during a period that I had a sizable kidney stone. My next PSA is scheduled for December and am hopeful that it will go down now that the stone has passed.

The biggest disappointment that I have had is the lack of follow-up care with Loma Linda. When I called and asked for some background information that would help me understand why my PSA was going up, they told me that I was no longer a patient and that I would need to see them for a complete workup before they could talk to me.

Since last January 2020, I have had three PSA tests. January (3.3), March (1.7) and June (1.3). I was quite nervous in January when my PSA went up. My Urologist wanted me to get an MRI at that point but waited until March. When it went down, he gave me a second 3-month repreive.

I have no idea why my PSA has bounce around, but am happy that it finally has gone down.

After three years of having my PSA go up and down; 2020 has been a good year. In the early spring it went down to 1.7, early summer down to 1.3 and now in early November it is down to 1.1. I have no idea why it took four years for my treatment to generate the results that we all wanted. Next update; spring of 2021.

It has been nearly 5-years since my initial diagnosis. It has taken a while, but my PSA has consistently gone down for the past year-plus. Everything is OK; no side effects and now no worries for now.

It has now been 5-years. PSA has now been stable at .9 for a year. All is well, nothing to report.

I went back to Loma-Linda for the first time in 5-years in October; the new hospital is a major change from my time in 2016.

It has now been 5-years. PSA has now been stable at .9 for a year. All is well, nothing to report.

I went back to Loma-Linda for the first time in 5-years in October; the new hospital is a major change from my time in 2016.

Six-month PSA check; went up from .9 to 1. It has been essentially stable for more than a year. If feel good and there really is nothing new to report.

Just got my mid-year PSA at 1.3. In the past year my PSA has gone from it's post-treatment low of .9 to .93, then 1.0 and now 1.3. It Spoke with my Urologist. He indicated that he wanted me to get a PMSA scan and then another biopsy. In that my PSA never went down to the generally expected range; he has indicated that my initial treatment was likely inadequate and that I would likely have to have additional treatment. I should know more within the month.

It has now been 6-years since my treatment at Loma Linda. It has been a complete roller coaster when it comes to my PSA.

After having 3 consecutive increases in my PSA over the past year plus; it went down for the first time to its lowest since having treatment. I had thought that my nadir was .9; when it came back at .7 to say I was surprised was an understatement.

After three consecutive increases, I was mentally geared up for another biopsy. I have been given a reprieve with my next PSA scheduled for late next spring. With a little luck, it will stay at its current level.

It has been 6-years since my treatment. In January I was feeling run down so I went to my GP. He did a complete blood workup and low and behold; I have been diagnosed with Chronic myelogenous leukemia (CML).

What I have learned is that according to Mayo Clinic, the risk factors for CML are:

• Older age
• Being male
• Radiation exposure, such as radiation therapy for certain types of cancer

I remember most of the discussions that I had with Loma Linda regarding the risks associated with Proton Beam Therapy. What I don't remember was the risk of Leukemia.

The good news is that this form of Leukemia is very treatable with a 90% survival rate after 5-years. The bad news is the medication is obscenely expensive ($17,000 per month before insurance).

After 6-years of PSA tests after my treatment; my PSA has finally started to really go down. .33 is the lowest that I can remember my PSA ever being.

Since my last report, I have had 2 PSA taken. Last summer it was .93 and this winter .63. My Leukemia is in check, and I am officially in remission. My colonoscopy noted radiation burns from my treatment, but nothing to worry about.

It appears that my PSA has stabilized below one (1) which is a relief after 5-years of roller coaster PSA tests.

Niven's e-mail address is: cnivenjones AT gmail.com (replace "AT" with "@")