THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2016 SO THERE IS NO UPDATE.

My PSA had risen from 3.1 in April 2006 to 3.8 in October 2007. I did not have another PSA test until August 2009 and the reading was 6.1. This was followed by another test 11 days later and the PSA was 6.9. A further test in October 2009 and the PSA was back at 5.5 however the free PSA had dropped to 0.50.

My doctor referred me to a urologist and I had a digital examination the following week which revealed enlargement but nothing else. My urologist recommended a biopsy which I had in early November. The biopsy consisted of six specimens with a total of 21 needle cores. Specimen five returned a positive reading on one of the four needle cores (five percent of the specimen). The Gleason Score was 3+3=6.

Given my age, my urologist recommended a prostatectomy however he also advised I could take a few months to decide due to the early detection and typically slow progression of prostate cancer.

I researched the available treatments and decided to undertake a program which a local doctor specialises in. This program consists of an intensive course of vitamin/mineral/herbal supplements, significant dietary changes and exercise. I commenced this treatment a week after my diagnosis in November 2009.

My next PSA test was in early February 2010 and the total PSA had risen to 10.5 however the free PSA had also risen to 3.2. I had another test later the same month and the total PSA had dropped to 7.0.

I saw my urologist in March 2010 and he was supportive of my decision, referring to my program as "active surveillance" and suggested I see him again in around three months.

In March 2010 I added an additional prostate supplement (Vietnamese herb) to my program, however although this has received positive reviews some people have observed elevated PSA readings. My next PSA test was in May 2010 and it had risen to 9.5. I stopped the Vietnamese herb after 3 months (end of May) but continued with my other supplements, diet and exercise. My latest PSA result in early July 2010 had dropped to 5.9.

I lost about 5 kg of weight due to my diet changes within the first four months but this seems to have now stabilised.

In response to a reminder Kevin said:

I'm just waiting on some PSA results scheduled for later this month and then I will update my story. I am hoping it will be good news because I have recently started taking a PSP supplement which has shown promising signs in scientific tests.

I continued monitoring my PSA with my lowest reading of 4.9 in March 2011, however this was short-lived and my PSA started to rise with readings around 6.8 in July and September then 8.51 in January 2012 and up again to 12.32 (with a free % ratio of only 6) in late February. By now I was getting extremely anxious and my Urologist naturally recommended another biopsy. After further researching the potential risks of biopsies, I decided to seek another opinion and got a referral to see an Oncologist who was happy to arrange an MRI at a Frankston hospital which had the latest MRI Tesla 3.0 equipment and more importantly, experience in interpretting the results. The results were not encouraging and confirmd the presence of the original tumour on the right base which was suspected to be higher grade (7 + gleason score). Of course this could only be confirmed with a biopsy which I was not prepared to do. It also revealed the likelihood of a lower grade tumour on the left base and the possibility of a further tumour in the centre of the prostate.

My wife and I came to the conclusion we could no longer continue with active surveillance, paticularly given my grandfather died of prostate cancer which was diagnised when he was in his early 50's and my father had his prostate removed due to enlargement in his early 60's and later developed small bladder cancers which were removed. I began to research all the treatment options, thinking that robotic surgery was going to be my best option but I was very concerned at the possibility of some degree of impotence and incontinence, not to mention a personal opinion that surgery should be a last resort option. I quickly ruled out all of the other well publicised options such as conventional radiation therapy and brachytherapy as the possible side effects seemed to be similar to surgery, plus as I was to find out from speaking to a radiologist, because my PSA was now over 10, medicare would no longer fund this treatment.

I began to read more about proton therapy and was interested in the technology which appeared to reduce the side effects of normal radiation therapy with almost no "exit" dose due to the nature of protons. Also the anecdotal evidence was very convincing with very few negative effects being reported. I contacted Loma Linda University hospital in the US and they sent me some information including an excellent book by Robert Marckini "You Can Beat Prostate Cancer : And You Don't Need Surgery to Do It". Afte reading this book and doing further research, my wife and I decided this was worth pursuing and it then became a question of where we would need to travel to, as this treatment is currently unavailable in Australia. Other than the US, the only other two proton centres that were offering this treatment for prostate cancer were in South Korea and Germany, although I suspect it may also be possible in Japan. The cost of the treatment was significantly lower in South Korea, approx $54K versus $85K at Loma Linda and around $74K in Germany. The other considerations were the length of time required for treatments and the type of proton scanning system in use. The Loma Linda program consisted of 45 treatments over 9 weeks with a 1.8 gy dose per treatment. The South Korea program consisted of 28 treatments (higher dose per treatment) over 6 weeks. The Germany program consisted of 21 treatments over 4 weeks and one day (3.0 gy per treatment). This centre was the only one using the spot scanning technology which appears to be more accurate than the older passive scanning systems in use elsewhere and more importantly reduces the amount of secondary neutrons produced.

I chose the Rinecker centre in Munich, Germany, mainly because of the newer scanning system and the reduced number of treatments, which their radiologist explained would deliver the same biological effective dose as the longer program in the US. I should also mention that all the new proton centres currently under construction in the US will also use the spot (pencil-beam) scanning system and most likely offer reduced treatment programs. In addition to the actual treatments, it is necessary to first attend the centre for a few days in order for diagnostics to be performed, then there is a 7-10 day period where the set-up work is conducted which means there is an opportunity to fit in some sight-seeing until the first treatment.

Prior to travelling I had two final PSA tests one week apart, and somewhat ironically the first one came back at just over 7 and the second at 6.0! I suspect that the earlier higher readings may have been a result of some inflammation in the prostate, however I did have a urine test done shortly after the highest reading (12.32) and there was no sign of any infections, etc. After further consideration I decided to proceed with the treatments based on my family history, MRI results and research which indicates a lower PSA does not determine the aggressiveness of a tumour.

We arrived in Munich in mid April and after three days of diagnostics which consisted of an MRI and CT scan, moulage (capsule) fitting and the insertion of three gold markers into the prostate by their Urologist which are then used to confirm the prostate position during the treatments. After this phase was completed we hired car and drove to Croatia for around 10 days which was a tough way of filling in the time until the treatments commenced!

As of now (May 21), I have completed 13 of the 21 treatments with the only side effects so far being a slight burning sensation during urination, an increased frequency of urination, reduced flow rate and a day or two of constipation. The increased frequency was only really noticable at the end of the 12th treatment, which for me was on a Friday and had settled down by the Sunday.

I completed the remaining 8 treatments by the end of May 2012 and we arrived back home a few days later. The urination frequency symptoms gradually subsided over the following two weeks.

I was advised that I should expect to see my PSA halve within three months and then hopefully continue to decline over a period of around 18-24 months. The aim is to reach a nadir of less than 1. My first PSA test after the treatments was in mid September and I was very happy to see it had dropped to 2.41.

My next PSA result in December 2012 was 2.06, followed by 1.63 in March 2013. In late December I observed a small amount of blood in my stools which occured intermittently over a period of a few weeks but not since. This did not concern me as this is a known side effect which can occur up to two years after treatment. My latest result in June has shown a slight increase to 1.91, which although a little disappointing after the other results, is not uncommon and I will wait until September for my next test.

Continuing to monitor my PSA every 6 months. No significant change in July PSA result (1.79) from January (1.77), next test will be in late December.

Kevin's e-mail address is: kkirby AT au1.ibm.com (replace "AT" with "@")

NOTE: Kevin has not updated his story for more than 15 months, so you may not receive any response from him.