Unanticipated Medical Adventure
Life is never what you expect and after a medical check-up in Chiang Mai in 2014 for new health insurance coverage there were some results that indicated further testing was needed. Hey what – I am healthy!
A long journey of testing, some procrastination on my part, then follow ups and double checking resulted in a finding – which did not please me!
Those who know me would probably say that I am usually forthright, open and – generally matter of fact. I have chosen to share my life challenging event – because I can – but more importantly, I am hopeful it provides other men with an awareness of this disease – to consider doing important prostate check-ups!
Prostate cancer (PCa) managed to take a liking to me and my prostate. I expect it has been lurking down there for some years and seems an increasing popular disease in men. Lots of facts and figures around about this disease and treatment options but it is very much an individual prognosis and treatment plan for each man.
I had a number of visits to doctors in both Chiang Mai, Bangkok and even Sydney. We found a urology surgeon I was happy with at Siriraj Private Hospital in Bangkok- it was like the Hilton Hotel.
Prostate cancer is the second most common cancer in men worldwide and even when successful, treatment can take a toll on your physical and mental health. I took a step back from the diagnosis to approach this calmly and logically knowing that this disease can have varied outcomes.
So my facts! Not that there is good news, but my initial prognosis was not too bad. At the start of the journey it was graded an intermediate (unfavorable) cancer stage that did not appear to have spread? So curability through aggressive treatment was recommended and was the way ahead for me.
I recognised that managing PCa is a battle and I invested the time and energy necessary to empower myself with the knowledge to make informed choices about my path of treatment.
I decided a strategy, found the best medical team and with the support of everyone made a judgment that it is better to get this thing out of me, to be free, to get the cancer out. It was rather upsetting time personally and in many ways has been life-changing.
People question the Thailand health system. From my experiences so far and depending on your choice of doctors and treatment centers it is very comparable to the west and at times better at less cost. I used a very qualified surgeon with years of experience and the largest and most up to date hospital in Bangkok to deal with this. He undertook a robotic radical prostatectomy in Bangkok on the 25 April – Australian Anzac Day – as it turns out, so this will be a “day to remember – for battles fought and won”.
I tried to take a positive outlook for a bright future that has a prognosis for a curable outcome. So it was full steam ahead – to cure the beast. I vividly remember being wheeled from my room to the theatre with apprehension. My anxiety level increased when the surgeon just before being taken into the theater asked me to sign a form indicated I was fully aware that their was the possibility of continence problems as well as erectile dysfunction issues. Now I am really worried – but its too late so let’s go for it.
Through a foggy consciousness I was slowly awakening from my sedation – it was over and I was still here. It didn’t seem painful and I was relatively comfortable. Eventually I was recovered enough for my trip back to the room.
That night and the next few days were long and tedious with challenges to move about – oh so slowly. I was sporting a catheter and accompanying bag. While I could move about it was awkward and exhaustion was easy to come by.
Short trips around the room and down the corridor followed. My food was fairly bland but sufficient to satisfy. My initial recovery was in hospital for 4 days and then we went to an apartment complex for 2 weeks until I could have “things” removed.
My son from Australia came to visit at to be with me during my surgery – very nice of him to represent the family. Ace, Shawn and I enjoying the Annantara Riverside Resort, Bangkok for 3 days in the lead up to surgery at Siriraj Hospital. A few nice meals, some Bangkok sight seeing, relaxation time by the pool, cultural history tours and a transvestite show were a few of the activities along with a river boat ride. It all helped to stall the nervousness of surgery.
After surgery there was a need to remain in Bangkok until my catheter was removed. So for the recovery period we managed to find a nice serviced apartment to while away the days doing some walking exercise in the gym, enjoying breakfast and getting rest – very tired I was. It turned out through some drama (that’s a story for another day) that the catheter remained in for 2 weeks so the stay was longer than anticipated.
The results from surgery and pathology indicated that the cancer appeared to have been removed cleanly. Unfortunately it turned out to be a high risk grade of cancer but at this stage seemed it was confined to the prostate. The doctors indicate I need to monitor with blood tests every 3 months for any signs of recurrence. It seems that some 10-40% of surgery patients experience PCa recurrence.
We flew back to Chiangmai on the 9th May for recovery over the weeks and months that followed. So medical treatments in Thailand are great. No worries to be taken care of here. I have never been a quitter and don’t intend to start now – so onward with this battle. I had the plan that PCa was only a temporary hobby.
Taking about this disease
A lot of men don’t seem to discuss their disease and treatment openly for some reason? It’s not something to be shy or secret about our ashamed of from my perspective. Many men – both every day and famous – have survived this disease and the journey through curative treatment. I intend to follow them. The treatment side-effects are understood (and are gross) and I think the worst part of this whole mess because of the potential impact on the quality of life. But better crappy side effects than the other option – live for today as they say….!
My partner Ace and my kids were tremendous to me on this private journey and without their help it would be a far greater struggle. I am sure the ongoing recovery phase will also be interesting! To date the recovery after 3 months is going well with almost complete control of the bladder. Other things are a work in progress. December 2016 and routine blood tests are monitoring my PSA – another trip to the Urologist is due in January 2017 for progress review.
I decided to write about this so my friends and others have an awareness of this challenge and speaking about it is also an awareness piece and my attempt to highlight it for other men out there – one just never knows without screening tests.
Living in Chiangmai and spending a few years building our new home and garden, getting pet friendly and trying to figure out life that did not involve working from 9 -5 was, and still is, the only plan I have in mind. Now with a new casual function as an Honorary Consul of Australia I am very determined to soldier on…for years to come.
Cheers to life ……good luck with my future. …from here on!
13/01/17 (10 Months post op) – Like most thinks in life there is always change, so after the operation and recovery road, there was the reality of how certain body parts now functioned and the ongoing routine check ups. The former was simply how it was and time may improve some things – it is a management strategy. The later involves going for quarterly blood tests and seeing the original surgeon for follow ups.
After the removal of a prostate the cancer marker (PSA) is meant to undetectable. For some patients that doesn’t happen and close monitoring is necessary to ensure that cancer has not spread or that consideration of follow-up treatment is reviewed in a timely manner.
In my case I didn’t return to undetectable PSA and it has been slowly rising. Nothing yet to be concerned about according to the medical team. 3 monthly testing will continued to monitor the PSA. It often rises and then stabilises. All good for now with on going medical reviews – so living as much a normal life as one can….
21/07/17 (15 months post op) – Been busy with life and living in Thailand as you can see from some of my blog posts. It is difficult to try to put this disease out of your mind and not think about it as every 3 month when you go for a blood test that, firstly, creates anxiety about what it will show up and then secondly, when the results come back.
My blood work has continued to show a continued rise of PSA (prostate specific antigen) ever since the first test after surgery. My PSA, using ultra sensitive blood tests, has gone from 0.03 to 0.20 since surgery. This is not a good sign. As well the doubling time is around 6 months – another worrying sign. Because my pathology after surgery indicated my Gleason cancer grading score was a 4+3+T5 (G8) (high-grade) when considered together with increasing psa and doubling time are suggestive of biochemical failure and distant spread (not confined to the prostate bed)
The diagnosis and treatment of recurrent PCa seems to be a varied science and uncertain art. From considerable research and discussions with specialists there is no standard treatment plan but an assessment and individualised approach. This approach is often determined by the doctors own views and preferred approach – these can vary widely and very inconsistent – all over the world. Research is not conclusive on the best treatment approaches to this disease if primary curative treatment fails.
In speaking with a local specialist he has indicated the situation appears to be an aggressive cancer that has recurred. There are no imaging tests at this level of psa that can locate the cancer to determine any targeted treatments. For PCa that is not localised any longer the standard of treatment is hormone therapy (ADT) – a dreaded approach that has numerous poor quality of life side effects. Research also suggests there is no clear value in starting ADT immediately versus a deferred start – trials have indicated the same benefits and outcome.
Current thinking is to continue to monitor the psa – yes watching it rise and knowing cancer can be growing – seems a strange strategy but treatment options are only guess-work with often terrible quality of life associated with it.
So too early to panic; signs of psa recurrence are clear, but not clear on clinical cancer (PCa) recurrence so the prognosis is a watch and wait approach. Can it grow and metastasise – who knows, maybe yes and maybe no. Looking at my statistics and reviewing some available charts of likely outcomes there is only a 15-20% chance of not getting metastatic prostate cancer at 7 years from now.
I will be heading back to my surgeon in Bangkok for a follow-up probably next month again and see what his thoughts are. There is a new PET/CT scan available in Australia and now Thailand – GA68 PSMA that works very well to image PCa with low levels of psa. So an option for future consideration perhaps?
For now I’m going to see what happens with the psa over the coming months and doctors consultations. The local urologist said to me – “its best to fight the cancer and not the psa”!? So lets see how this all goes.
7/09/17 (17 months post op) – Have an appointment with my urologist next week so headed for the dreaded PSA test ahead of seeing him. On the way to the hospital the sky’s opened up and buckets of water poured down. It was the most intense thunderstorm. Arriving a bit soaked I was lucky to be able to quickly give my sample and leave. The next day the email from the hospital arrived.
This is always anxiety raising – so the result is 0.26 – way up since last test of 0.18 only 2 &1/2 months ago. So what does this mean? Development of biochemical recurrence with a rising PSA level after radical prostatectomy causes significant anxiety for patients and treating oncologist. Management of these patients is controversial. Studies and tables suggest that if you have Gleason 7 disease, but your PSA goes up within two years of surgery and the time it takes your PSA to double is less than 10 months, (this fits my profile) then your likelihood of being metastasis-free at seven years is only 15 percent. Poor odds it seems – progression is likely?
These tables are apparently designed to reassure the many patients who are going to have a long-term, symptom-free, metastasis-free interval. An average 7 year interval isn’t that reassuring in my view! According to a prostate cancer expert, Dr. Wash, he indicates that close observation is all that’s really necessary. He does indicate, however, that if your chances of progressing rapidly are high (mine seem to be with G8 & fast doubling time), you may wish to start hormonal therapy earlier or get involved in an experimental trial for more aggressive treatment. The prediction tables will help you make a more educated decision about your future medical treatment.
So looking forward to my chat with the specialist next week? Another one of life’s challenges to manage – lets look on the bright side.