January 2009 was the beginning of my journey with Prostate Cancer. My life has been an adventure of travel and many changes of direction for the last 40 years. The adventure started in Brighton England when I was hitch hiking on my first long journey. The first driver to pick me up asked me where I was going. (INDIA) He gave me a funny look and dropped me off half way to Dover. I was on my way to finding the answer to life or my Guru, I only found Delhi Belly in India. I traveled on and found what I had been looking for on Bondi Beach, Australia. Her name is Sheryl and we have been stuck to each other like glue for the past 37 years. So this new journey with the big PC has been together as have all of our journeys of the past.
January 2009 my yearly PSA test came in at 26.88, my Doctor sent me to our local Urologist for further investigation. He whipped me in to theatre within a week for a biopsy. The results came back and at an appointment the next week he gave me in his words. The bad news is you have Prostate Cancer, Sheryl and I sat in stunned silence for a couple of minutes before I asked him what we do now. He said he would recommend a Radical Prostatectomy as soon as possible and that would extend my life by 5 years, as I was still young enough at 58 and healthy enough for a good result. I was a poster boy for his expertise.
What is a Radical Prostatectomy? Looking at his watch and thinking about the queue in his waiting room he handed me a small booklet on Prostate Cancer. Sheryl and I were in shock and disbelieve at what we had just experienced. After a few days surfing the net to try and get some of the answers we felt the specialist could have given us if he had had the time. I ordered several books from Amazon.
Then we found YANA. The journey just got a whole lot clearer; we have found the map that will show us the many different routes available for our journey. The next week at our appointment with the urologist I asked for a copy of my file as I wanted a second opinion before I would proceed with any operation. That was the last time I seen him. After a phone call from my house doctor we finally got my file. By then I had read reams of information on YANA and checked out numerous other sites dedicated to Prostate Cancer. I was by this time informed on the many choices available to me and where to look for assistance. Proton or HIFU was becoming my choice of treatment but I would have to travel overseas for the treatment as it was not available here in South Africa.
Several weeks later I went for a PSA test. It came back at 7.99 which was a big drop from 26.88. When the urologist went in to do the biopsy on my prostate he also went up into my left kidney as there was a shadow showing up inside the kidney. All was clear but the urethra tube had been restricted. Urine retention in the kidney could have been the cause for high PSA level of 26.88. [Indeed it could. Prostate cancer is NOT found in at least two thirds of men who have elevated PSA levels - see PSA 101 - the level is raised because of this kind of infection]
I have been practicing Active Surveillance ever since with my PSA rates going as low as 3.6 with my last test on September 13, 2011 showing 6.92.
Thanks Terry, Your site has allowed us choices and direction that has allowed Sheryl and I to enjoy life to the full since our PC diagnosis. We have been travelling the world and enjoying good quality time together. Life is too short to be too serious. Keep up the good work.
My latest PSA January 13, 2012 came back at 13.5. I had to quickly go back to the YANA pages to get some reassurance that this could be related to an infection or other reason unrelated to my Prostate cancer. I read many stories and read Lorenzo Q Squarfs story again that I had printed out a couple of years ago. Phew what a relief to rediscover that great saying Don't Panic.
I made an appointment with a new Urologist that moved to our town just over a month ago. He is our first resident Urologist after years of visiting Urologists. I took all my files and results to give him as much info as possible. What a refreshing surprise he was. Unlike my first experience this new guy agrees with Active Surveillance and second or even third opinions etc. He even recommended that I consider another Urologist who he considers the best in South Africa should I decide on a Radical Prostatectomy.
After a more than one hour consultation he did a DRE and gave me a script for a course of Ciprobay XR 1000 - a 5 day course. I will have a PSA test a couple of days after finishing the course. Hopefully the increase is associated with an infection as we are off to Christchurch, New Zealand at the beginning of Feb. to spend a few months with Sheryl's Dad. After that we might head for some warmer weather USA Europe or up north in Aussie.
So much to do and no time to stop for the Knife. That's my excuse and I am sticking to it.
The 5 day course of Cyprobay reduced my PSA to 13.53 so the Doc gave me a further 7 day course of Cyprobay. I got the last PSA test results yesterday after finishing the last of the Cyprobay and its down to 6.6
I keep telling myself not to take too much notice of these PSA result after reading all the other experiences on YANA. But it does put a bounce back in your step when you get a good result.
So we are off to the Land of The Long White Cloud Tonight [aka Aotearoa or New Zealand] via Perth and Brisbane. Pretty confident now that my Walnut won't explode at 30,000 meters above the Indian Ocean. Not too sure about the effects the Christchurch after shocks will have on the Walnut. Think I might nickname it Elvis if it gets "All Shook Up Ah Ah Hu".
February 2012 was my last update. We are off to New Zealand beginning of February again as we did last year to spend a few months with Sheryl's Dad in Christchurch. So thought I better check if the walnut was still producing PSA. I have been avoiding going for a PSA test. Last one on 27 June 2012 was 6.35.The latest 15 January 2012 is 6.19 lower is good. I have also avoided my Urologist as he wanted to try another biopsy on my last visit to him in January 2012. My general health has been very good with no side effects that I am aware of. So I will probably wait another several months before having another PSA test. I had a very pleasant surprise a few months ago while reviewing my insurance policies with my broker. I discovered that I was covered for dreaded disease. Sent of all the relevant information and got a very nice payout. They even repaid my premiums for that cover backdated to original diagnosis in 2009. Moral of the story Check your policies and claim what you are entitled to. Thanks again Terry and the YANA site without your valuable and honest information I could have been De Walnuted by now. My annual donation is on its way.
Total PSA Ratio
We spent 3 months in Christchurch with Sheryl's Dad went back to South Africa for a few weeks and had a PSA test on 1st June 2013 came back at 6.20. No movement there but a bit more movement for Sheryl and I. We are in Scotland staying with my brother Gordon and his wife Liz. Liz had an op for Bowel cancer a few months ago. They decided to go on a cruise up the Baltic to St. Petersburg, So we decided to come across and join them. Great weather and great company made the cruise really special. No time to stop for the knife or any other radical treatment. Continuing with Active Surveillance and lots of travel.
Been a while since my last update, After returning from our summer in Europe I had a PSA test October 2013 Came back at 6.81 so not much movement down there. I went to see my urologist in Cape Town just before Christmas. He performed a quick DRE and stated that my walnut was quintesent I wasn't sure what he meant Was it lighting up for the Xmas holidays or having a wee dance by it's self. So he said in plain English it is very quite and he was happy for me to continue with Active Surveillance. So big relief all round. I am not taking any meds but have been taking Ateronon which is a highly bioavailable lycopene based food supplement one per day for the past 6 months and a few multi-vitimins when I remember. I will probably wait another few months before my next PSA. Meanwhile no time to stop for the knife as we are off to New Zealand at the end of this month to spend some time with Sheryl's dad and catch up with our son Simon and his wife Tarryn who moved to The land of the Long White cloud in December. Thanks again Terry for your Yana site, my annual donation on its way.
Just been reviewing my story on Yana and realised that I am now a silver member. Going for gold and a few more years with my walnut intact. We have been in New Zealand since end of Feb. I decided to have a PSA test while I was here. It came back at 7.9 which is slightly higher than my last test in South Africa but that could be using a different lab. Not worried about such a small increase. I also had a whole range of blood tests done and all came back OK. So gold member here I come. Will have a PSA test when we get back to SA next week just to compare tests.
Well it's been a year since my last update. How time flies when you have an active walnut. It's been a year of adventure for Sheryl and I. Summer in Europe then summer in New Zealand and now back in Sunny South Africa for winter. But hoping to visit our youngest son in London July / August. It's been 6 years since my Prostate cancer diagnosis and I feel that the decision to practice active surveillance has been the best decision for me. My PSA is rising slowly 8.50 on 31-10-14 and the latest was 10.39 on 28-05-15 I was a bit concerned going over the 10 threshold and headed straight for some words of wisdom on the YANA site. After reading more updates from my fellow Walnut clan I came across another Scotsman's story with the same surname as myself. Frank Pollock. Frank has inspired me to continue with active surveillance.
Here is Frank's last comment which I found on his story.
Many who read this will dismiss me as a reckless bampot. Maybe I am a nut job but everything in the ephemeral world of PCa is crazy and contradictory. Nothing is quite what it says on the tin and you have to make the best risk/benefit assessment you can all by yourself. No one else will, or can, do it for you.
Several months since my last update. We have been back in New Zealand since February. Came back to look after Sheryl's Dad who sadly passed away in July. I had a PSA test done via my local Doctor here in Christchurch.
It came back at 11 which was another increase. My Doc advised me to see a local Urologist. That appointment ended up with a Scan and a Biopsy which came back positive as I knew it would. Came back with a Gleason score of 7. Follow up appointment with Urologist predictably advising Radical Prostatectomy or Radiation treatment. Appointment to arranged with Oncologist. Not too keen to have any of the treatments on offer. Any positive feedback will be gladly received.
Thanks Mark for the reminder, can't believe it's a year since my last post on YANA.
How time flies when you are having fun or the older I get the quicker time disappears. Well let me try and remember what has happened in the last year. Since my last update, I have had a couple appointments with my Oncologist. I have found her to be wonderful and very supportive in my decision not to have any of the treatments that are available. My last PSA came back at 10.5 So that was a positive if you take much notice of PSA readings. .5 drop is a positive to me and has encouraged me to keep on Active Surveillance going forward into the future. I am now heading towards 8 years next January since my original diagnosis. That's when we found YANA.
That is when the journey just got a whole lot clearer;
Thanks to Terry and this wonderful site YANA I have been able to live a life full of adventure without the side effects of Walnut Theft. My donation is on its way, Keep up the good work Mark.
Gavin's e-mail address is: email@example.com