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This member is a YANA Mentor This is his Country or State Flag

Niven Jones lives in Arizona, USA. He was 62 when he was diagnosed in June, 2016. His initial PSA was 5.10 ng/ml, his Gleason Score was 6, and he was staged T2c. His choice of treatment was External Beam Radiation (Proton Beam). Here is his story.

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.

UPDATED

April 2017

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.

Niven's e-mail address is: niven@niven.cnc.net


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